Support Mariana Chacón in Overcoming Chronic Illness

Hi everyone, My name is Mariana Chacón, and I am writing to humbly ask for community support. I feel a bit awkward doing this, but I truly need your help.

I’m 31 years old, a first-generation immigrant from Costa Rica, queer, and unfortunately, chronically ill.

Long story short– This year, I started experiencing a variety of strange and unexplainable symptoms affecting different systems of my body. Despite countless ER visits, doctor appointments, and tests, I still don’t have a definitive diagnosis other than it being an autoimmune disorder (where’s Dr. House, am I right?). This unfortunately caused me to be out of work for 6 months, but now that I am more stable, I have finally started the process of beginning a new job. My incredible partner has been supporting us this year, but as you can imagine, we have depleted our savings and have been in a place of financial desperation. If you are able to, please consider donating to help me get back on my feet.

Your support will help cover essential expenses, including medical bills, housing costs, and other necessities that will help me get back on my feet. Any contribution, no matter how small, will make a significant difference and is deeply appreciated.

The full story– At the beginning of this year, I started experiencing excruciating and concerning symptoms from my kidney and bladder. This led to numerous hospital visits, trying to figure out what was going on. The uncertainty and frequent hospital visits have been incredibly stressful and exhausting. I’ve had physical health problems my whole life, but they were often dismissed as normal. Kidney problems here, stomach issues there, some joint pain, and so on.

In between these multiple hospital visits, I also started experiencing problems with my vision, including extreme light sensitivity and flares that make it difficult for me to see. The inflammation is called scleritis, where the sclera (the white part of your eye) becomes inflamed. Imagine a halloween eye with engorged veins all over. It’s incredibly painful and in peak flares I cannot use my eyes altogether and will have migraines for multiple days with no relief. Before starting treatment I had a flare for 3 consecutive months, which was when I could officially no longer work. It took an additional 3 months to come to a more stable place with the frequency of flares at minimum. This has unfortunately created some permanent damage to my eyes in vision and light sensitivity. I am currently in need of 3 new prescription glasses (regular, sunglasses, and photophobic glasses), so if you catch me wearing sunglasses at night that is why.

Anyways, after multiple examinations and CTs, it has been determined that I also have interstitial cystitis, which is inflammation of your bladder. I have had mysterious inflammation of my lymph nodes around one of my kidneys with no presence of infection in my body, and, at times, my bladder decides not to void completely for no apparent reason.

On top of all of this, my joints appear to be weak. This was something I was not aware of and I chalked it up to be.. Normal? Anyway, my joints hyperflex and pop all the time. Just the other day I dislocated my shoulder in my sleep. Neat!

I was initially diagnosed with lupus but apparently only 1% of lupus patients struggle with scleritis so that was taken off the table. The tests I have undergone shows I don’t have a rheumatoid factor, so thankfully it’s not rheumatoid arthritis. Otherwise, my doctors still don’t know what it is and we’re doing this guess-and-check game,

Unfortunately, the process to get diagnosed appears to be tracking symptoms and by throwing drugs at it until there’s significant improvement. Currently I am on two different immunosuppressants (hydroxychloroquine and cellcept) and two prescription eye drops. The cellcept prescription is still very new and replaced my previous medication, methotrexate, which is a low dose chemotherapy.

With no definitive diagnosis, and therefore, multiple changes in treatment, it has been extremely difficult to battle my illness, and impossible to work. As a result, I’ve been out of work since March but I am proud to say that I am finally starting a new job. Although I still do not have a clear diagnosis, I am working with doctors in finding the best treatment for my symptoms with the least side effects.

Although there has been progress, the months without work have depleted my savings, and despite the support of my partner, who has truly been amazing through this all, one salary just isn’t enough. We have reached a point of desperation.

Your support will help cover essential expenses, including medical bills, housing costs, and other necessities that will help me get back on my feet. Any contribution, no matter how small, will make a significant difference and is deeply appreciated. Otherwise, please consider sharing.

Thank you for taking the time to read my story and for considering a donation.

Your kindness and generosity mean the world to me.

With gratitude, Mariana Chacón