After nearly 15 years of my Lupus SLE being stabilized and 15 years of Lupus Nephritis in remission- the stress of life/being a business owner the last 6 years has taken quite the toll.

I’ve been struggling immensely this whole last year barely keeping my head above water with medical bills, keeping my business running (IG: @oraclepokes / @lugubriousliz), and my health in check. Being a business owner is a double edged sword in this situation where I’m so blessed to make my own hours & be able to take the time off. However, I can’t afford to take the time off and don’t have the money to put back into my business/keep my business running while *my body is actively trying to kill me.

Proceeds would not only go towards necessities like toiletries, medications & supplements, copays/medical bills, but also keeping my buisness open. Logistically, getting a job other than my private studio would be nearly impossible to commit to in the state that I’m currently in. Being able to restock jewelry would allow me to work minimal hours/take a few appointments a week while still being able to afford basic necessities. However I can’t do that without having the basics in stock, which really add up when you require quality. This however comes after getting my basic needs paid for & medical debt out of the way. Although I wish it could be the other way around. There is unfortunately a major sense of urgency with the medical debt and my ability to continue treatment.

Any additional proceeds would go towards a motorized wheelchair so that I will no longer be stuck at home 24/7 and can have some sort of quality of life while I’m flaring with the bottom half of my body being out of commission instead of being completely bedridden most days out of the month.

*My lupus started flaring back in June of 2024. I continued to work the best I could as I had just signed a brand new lease on a private studio in April of that year. I worked as hard as I could but just kept getting sicker and sicker to the point where I was fully reliant upon a cane which gave me further issues in my shoulders and back leading me to give up movement almost entirely.

*Systemic Lupus Erythmetosis is an auto immune disease that affects every person who has it completely differently. It’s like a finger print. I like to call it the mother of all autoimmune. It is a connective tissue disorder in which your immune system is dysfunctional and doesn’t recognize healthy tissue from unhealthy tissue, so triggers like UV/sun exposure, bug bites, high cortisol levels (stress or anxiety), etc can cause a literal allergic reaction to oneself leading to a plethora of absolutely horrific symptoms as well as other diseases or illnesses by proxy. So for example, I developed fibromyalgia by proxy and was diagnosed in 2015. Whereas many lupus patients end up with arthritis (which is a more recent diagnosis for me, lupus arthritis to be more specific), fibro, raynaud’s syndrome, Sjögren’s disease, & so many more. These can come about at any point in one’s lifetime as long as they have lupus. Sometimes they are diagnosed with one before the other and something like raynaud’s syndrome is a red flag that can help diagnose one with lupus.

In my case, I am most succeptible to kidney failure or kidney swelling. When I was diagnosed in 2011 (age 11) with SLE, it was accompanied by stage 3 Lupus Nephritis which almost killed me (swelling of the kidneys).

I although my first symptoms came about in 2009 (severe lymph node infections in my neck). Between 2009-2011 I had severe aches and pains that were not at all typical of a 10 year old athlete, so nobody believed me. Everybody thought I was being lazy, or trying to skip out on sports practice when that was not at all the case. Nothing came up on bloodwork and everything seemed fine other than severe spring allergies and the occasional severe lupus symptom (rashes etc). Then came the pain in my left knee, that was completely debilitating.

I had a championship soccer game and as the goalkeeper, they needed me. The other team caught a breakaway and I just collapsed and started sobbing on the field. They rushed me to the ER, had an X-RAY done and turns out, I have a benign tumor on the side of my left knee. We planned for surgery. A week before surgery, they told me to stop taking Advil to prevent bleeding out. This is when everything spun out of control. Over night, was riddled with symptoms such as completely imobilized hips, knees, ankles, shoulders, elbows, wrists— just all of my joints because of indescribable, horrific pain I wouldn’t wish upon my worst enemy, heck- the worst person in the world. It was so **** terrible. I cried myself to sleep every single night. My mom bathed me, fed me, & tucked me in at night. She brushed my hair. I couldn’t do anything myself, I was completely helpless.  This was accompanied by sores in my mouth, nose, (I couldn’t eat anything that had salt, sugar, really any seasoning), large sore like warts on my elbows that were really painful, my hands swelled up like balloons, extreme fatigue, zero appetite, and more. This is how bad it can get, but how quickly things spin out of control might be the scariest part. My diagnosis took about a year from 2011-2012.

A year of these symptoms beating me to death, literally. But they caught it just in time with a kidney biopsy that saved my life, and changed my life forever. I missed about 6 months of school during the peak of my flare/diagnosis process and started chemotherapy & high dose prednisone immediately following my diagnosis. My team was incredible. So patient, kind, gentle and caring. I’ll never forget how wonderful they were, and that’s what made transitioning into adult rheumatology so difficult. No matter what I experienced and how much paperwork you show them, I’m always too young and too alternative to be sick. I look to healthy to be this sick. I stopped seeing rheumatology from 2015-2021 since I only had random symptoms/flares here and there that I could slap prednisone on and be okay.

Due to all the medications I was on, I went from weighting 90lbs at 5’2 to weighing 160lbs. I was bullied relentlessly at my new school. Fresh into 6th grade, especially after showing up for the first 3 weeks as the new, cool Wasian girl, coming back and being completely unrecognizable. It felt horrible to be forgotten- but then to become a target for something that was completely out of your control. Awful. Lupus taught me so much about loving yourself and loving those around you for who they are, not the show they put on. I feel as if this flare is a stark reminder especially in the current social climate we live in today.

Fast forward to today. Luckily, since I already have my diagnosis I didn’t have to suffer the full extent of lupus that I did as a child during this flare even at its peak. I did however experience the oral sores among in other exceptionally uncomfortable areas, swelling of my knees, ankles, hips, neck, shoulders and excruciating pain that ebbs and flows but often leaves me crying myself to sleep at night. In my current condition (as of 8/14-8/21) I’ve experienced the same radiating, shooting, stabbing pains accompanied by instability in my knees, ankles and hips. I try my best to fight through it and stay strong but one can only stay strong for so long. My body is incredibly fatigued from constantly fighting itself & suppressing itself. It’s incredibly cyclical, my immune system goes and attacks my joints (lupus arthritis) and my medications then suppress and fight my immune system leaving me exhausted. I have good months, like July, but I also have really bad months. Sometimes I only have a good day followed by weeks of dread. I do my best to put my best foot forward and my happy face on for my friends, my family, my clients (aka my homies bc all my clients are my homies at the end of the day), and ultimately for myself. My inner child and hopefully my future children. I truly believe doing your best is the best you can do and I’m trying to celebrate even the smallest wins, like doing my laundry or taking a shower.

In terms of my current treatment, chemotherapy was said to start working at around 3-4 months, then I was told more like 6 months, but since joining a few Facebook groups “benlysta buddies” a lot of folks have said they didn’t see a drastic improvement until a year+ of being in treatment. My chemo was supposed to be covered by the company who makes the treatment, but there seems to have been a major misunderstanding so I may have to switch treatment plans after paying my outstanding rheumatology bill because there is no way I can afford $700 per infusion with no income. However, Benlysta is said to be especially effective in preventing nephritis and kidney failure/dysfunction which is one of the scariest things for people with lupus like myself who have the predisposition. That said, I would really really like to be able to see this treatment out if at all possible.

Creating a gofundme has always been my last resort in circumstances like so but I’m unfortunately at my wits end. Any and every penny adds up and gets me one step closer to paying off my medical debt. I want to get better as soon as possible so I can get back to work. I miss my career so much, it was everything I could have ever dreamed of but now I’ve been on/off stuck bedridden for about a year. I’m so so tired of being so sick and tired. I want more than anything to be healthy & back on my feet again. I want to be able to finally start physical therapy so I can get back into the gym hopefully by this winter; feel the wind in my hair, grass between my toes, hang out with friends… I’ve been stuck in bed for months. Even when I was/am able to work, I was limited to 5 clients per week and that demanded around 18 hours of sleep after each work day putting my body completely out of commission. I need to heal but I don’t have the luxury of taking “off” work. Just currently forced into not working due to the current circumstances. My rheumatologist has prescribed me rest and wanted to write me a “work note” to get me off work, but I’m my own boss and I have to work to survive/pay my bills. The only way it seems I’ve been able to make any progress in getting better is resting and staying off my feet as much as possible. 

I’m in the process of getting unemployment but won’t be accepted until July of 2026 at the very earliest. If I had a choice I would work my ass off right now to pay these bills, but the more I work the sicker I get and that’s just been proven time and time again over this last year. 

Thank you for taking the time to read or share. I know it’s an exceptionally tough time for everybody with the awful state of our social/economic climate & I wish the best for every single one of you.

You can also support by buying a gift certificate for a tattoo/piercing via @oraclepokes/@phantasia.pokes on IG. The ONLY WAY to purchase one will be to speak to me directly via my phone number, [phone redacted] * can be found on my Instagram page @oraclepokes. I will NOT reach first. I will NOT reach out via dm, twitter, etc. If you’re unsure please message my personal Instagram account @lugubriousliz. I can still accept appointments sparingly here and there, so don’t be afraid to reach out. Thank you

Venmo: EFESSEL

Cashapp: $EFESSEL

Thanks for taking the time to read/take a look. I love & adore you all endlessly. I will always wish the best upon each and every one of you. I wouldn’t wish this upon even the worst human being in the world. Lupus is entirely unique to every person who has it and not a single case is the same. I hope that when i come out on the other side I can be a strong advocate for those who can’t/don't speak up for themselves or are gaslit into thinking it isn’t as severe as it is. Hidden illnesses are killer. We survive, just like those with cancer or other illnesses do you just don’t see the symptoms from the medications on the surface other than prednisone bloat/weight gain which often just looks like laziness. Please always think before you speak upon other’s experiences, you have no idea what anybody is going through at any given moment. Sonder. 

To learn more about lupus, consider purchasing the lupus bible online or visiting lupus.org. The unique thrift store on veirs mill road also donates a percentage of the proceeds to the lupus foundation of America.

Sincerely, Ebee. ❤️‍