Name: Jordyn
Age: 28
Location: Buffalo, NY
Diagnosis or suspected diagnosis: Systemic Lupus and Lupus Nephritis
How long did it take you to get a diagnosis or how long have you been waiting for one: Luckily it was a quick diagnosis for me. I was 18 years old and woke up feeling like a 90 year old. Within days I was in a rheumatologist’s office and he told me that I had lupus. This was also a few weeks before I was going to begin my freshman year of college on the women’s basketball team with a scholarship.
Top 3 worst symptoms: There are so many and they all change depending on the year. I would say hair loss is my top. I experienced this for over a year and it’s a very difficult thing to go through, if you’ve been through it you know what I am talking about. I saved up some money and bought a $400 wig because I thought it would make me feel better. Second worst symptom was severe edema. My body was so swollen for over a year and I mean my ENTIRE body. This was due to my kidney’s deciding to take a shit on me. It began in my feet and worked its way up to my face. I couldn’t fit into any shoes, pants, and people started to ask if I was pregnant. Not to mention the pain of your skin feeling stretched constantly. Right now this has been under control but my legs still get mildly swollen after a long day. The last symptom would be inflammation during a flare. During the first 3-4 years with lupus I had a lot of flares that caused severe inflammation. I could not leave the bed or put weight on my feet as it felt like I was walking on nails. This was also a time that I visited the ER regularly to stop the pain. I remember shaking in my bed at night because of the pain. I would be admitted into the ER and just pumped with pain medication for hours.
Are you on treatment? If so, (and if you feel ok sharing) what is the treatment?: I dream of days when I am not on treatment. Currently I am taking Spironolactone, Bumetanide, and 5mg of Prednisone. This is a very low and minimal regiment. I am also on an infusion called Rituxan. I have been on this for almost two years! Supposedly it is supposed to help my kidneys and kind of a last hope for not being on medicine forever.
Hardest part about being chronically ill: 1000% the unknown is the hardest part about being chronically ill. You could be feeling pretty damn good for months but then your labs (blood work & urinalysis) says otherwise. It takes a huge mental toll not being able to have answers to so many things. Being married and a woman I am constantly thinking of when can we try for a baby? And then you go down this road of what-ifs, why me, and other ways of self-loathing. Highly recommend chocolate and wine on those days. Additionally, each year of my lupus has not been the same. One year I am so swollen I look pregnant and the next year I look emaciated.
Biggest misconception about being chronically ill: GOD there are so many. I’d say that the biggest misconception is that we can heal ourselves through a super healthy lifestyle. It’s not rocket science to connect a balanced diet and exercise with better health but we cannot control our disease. I’ve tried it all; acupuncture, Chinese medicine, vegan, gluten free, dairy free, caffeine free, meditation. I can still hear people asking “have you tried this?” (insert eye roll emoji). When we limit ourselves or become obsessive over a diet or way of life that it causes additional unnecessary stress. There is no cure for lupus and many autoimmune diseases. Yes, eating a balanced diet can help different ailments but there will never be a day where I won’t have lupus.
A goal you are working toward right now: Well my goals tend to change on a monthly basis. BUT a reoccurring goal is to get off of all of my medication for the first time in a decade and grow our family. A more realistic goal I am working towards is completing my master’s degree and continuing my career in higher education.
Advice you would give to others who are going through similar things: Do not be so hard on yourself. I am still working on this but it is one of the many things I tell others. If you want a glass or five of wine, DO IT. If you want some candy, EAT IT. If you want something, BUY IT. Obviously within means and if you are on medication maybe skip the alcohol but you get what I am saying. I think we spend so much time worrying and stressing about so many things that are out of our control and not realize that there are a lot of things that we can control. I would also recommend taking this disease seriously. I was 18 and my head was all f’d up. I skipped my medications, lied to my doctors, partied, and other things that made me very sick.
Best self care tool: Well besides my husband, LOL, I would say setting boundaries. Again, this is also something that I am constantly working on but it is a great thing to do. I have had a close friend tell me that they didn’t even believe I had lupus (LOL). Then other friends don’t even care to ask or know what to say. So I say it for them by just limiting my time and effort with them. Quality over quantity people. Having a chronic illness we all know that life is short and we shouldn’t be spending it with people who don’t really give a f about us. I also tend to cut off people who just add too much anxiety to my life as well. It might seem selfish but you don’t always owe people explanations for not calling or texting them back. Unfollow that fake ass friend, block that family member because they suck, and enjoy your life for YOU.
Favorite way to pass time: Eating is close to the top of the list. I also enjoy going on Airbnb and planning fake vacations. But I truly enjoy walking my dogs (or them taking me for a walk), having good conversations with friends, and trying new food or drinks. I tend to try things for a month or so then drop it. I have intentions to be a runner, a bookworm, and a baker but it’s seasonal.
Favorite show/movie/book/song: Love my Bravo shows: Vanderpump Rules, Summer House, RHOBH, and Below Deck. My favorite movies would be Talladega Nights, Kingsman, and any Christmas or seasonal movie ( I live for the 31 Nights of Halloween and 25 Days of Christmas on FreeForm). Music is all across the board, love me some Queen and Elton John, but love to twerk to some Rick Ross or any type of thot shit. My husband also got me into country so I love Billy Currington. But I also vibe out to folky type of music like the Lumineers. Music has gotten me through a lot!
Advice for family & friends who are supporting a loved one through chronic illness: Just be there for them. I know that it can sometimes be hard to find the words to say, trust me, I still can’t find my words with friends or family. But just be yourself. Ask questions. Make them laugh. Don’t treat them like a victim or someone from an episode of House. Also, respect their space. Sometimes I don’t want to talk to anyone so just let them know that you are there for them and whatever they need. Just love them and be kind. It is very simple.
Anything else you want to share with the world?: The physical aspects of someone with a chronic illness can sometime be obvious. Then people instantly feel empathetic and all that good shit. But majority of chronic illness is invisible and also affects our mental health. Not only are we battling our bodies everyday but we have a life just like everyone else. We have friends, family, significant others, school, work, finances, and all of the additional stressors on a regular basis. It truly takes a toll on your mental health when you add being sick to the list. Talking to a therapist is something that I highly recommend to anyone struggling right now, or even if you aren’t right this second! You never know when life will just take you to your lowest point. Prior to being diagnosed with lupus I was severely depressed. Then the diagnosis heightened the depression to levels that I never thought it would ever go. It’s funny because people would never know; I am a smiley and humorous person with most of my shit together. Only like a handful of people know the depths and details of my depression.
Instagram: lupusnewyork
THE UNDIAGNOSED 