<div>In 2005, when I was 22 years old, I nearly died in the hospital. It was dramatic, but I was ultimately okay. Or okay-<em>ish</em>.

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<div>TL; DR: I have ulcerative colitis, and had emergency surgery on Valentine's Day to remove my entire colon. My medical team hoped this would mean a "cure" for me. It was not. I'm on a long, twisty road to recovery but my medical team agrees I can't fully come back from this without taking a long time off work by applying for SSDI. But my entire family, including my funny, kittycat-loving five-year-old son - depend upon my income. Working has been making me sicker. I have to stop. I can't keep getting sicker. Because my family also depends upon me being...alive. The professionals tell me it takes months to be processed for SSDI. And we had savings, but those were wiped out by a year's worth of medical emergencies. We need your help to keep my family afloat while we're waiting to be processed for relief.

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<div>Back to the narrative! It turns out I’d been unknowingly sick with ulcerative colitis since I was a teenager missing theater cues in the bathroom. UC is a lifelong autoimmune condition where the colon attacks itself, becomes inflamed and ulcerated, and bleeds—causing pain, fatigue, and malnutrition. You are more likely to develop colon cancer. Your colon can blow up and explode. Your immune system turns against you, so any particular germ can cause intense illness. About 1.3 million Americans are affected by inflammatory bowel disease (such as UC or Crohn’s Disease)

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<div>For example, I developed c-diff, a life-threatening infection. That bacteria now forever lives in my body and could reawaken anytime without warning. I’ve had pre-cancerous polyps burned off my gut. My hair has fallen out three times; I own a lot of pretty scarves.

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<div>No matter how hard this disease has tried to drag me down, I’ve always been able to get back on my feet. I learned how to rock climb. Tom, my 7th-grade science teacher husband and I hiked into Canada just to see the big whooshing side of Niagara Falls while he told me facts about rock formations. I’ve taught friends who never learned how to ride a bike. I once sourced mittens for every new winter refugee family in Philadelphia. I had a beautiful baby boy. My family had an active, vibrant life.

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<div>But in 2022, everything changed. I’d been “failing” out of the various medications that treat ulcerative colitis. I was being prescribed such a massive dose of prednisone in an attempt to manage the disease that I had to be put on an additional medication to ward off prednisone-induced psychosis (a terrifying side effect especially with a small child relying on your love and good judgment). But even with that, the inflammation was untamed.

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<div>Then, in the second week of January, our neighbor’s pipes burst and flooded our apartment. We were cleared to move back in before the remediation was completed and I had an allergic reaction to the mold. My face puffed up and my eyes were swollen shut. It hurt to breathe. And my uncontrolled ulcerative colitis just RAGED.

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<div>On Valentine's Day I was sent for emergency surgery. I remember buying a heart teddy bear from the hospital gift shop for Tom to take back to our son after he left me at the hospital alone. My entire colon was removed, and my small intestine was diverted into an ileostomy. Some doctors refer to this as a “cure” of sorts for ulcerative colitis. For some patients, it is. More than anything I remember the pain. I remember trying so hard to video chat our little boy, and Tom covering the phone before he could see me. So he wouldn't be scared. I remember Tom bringing stacks of science quizzes to the hospital to grade as I slept.

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<div>And I still wasn't cured. I was in a tsunami of new complications. Tapering off prednisone sent me to the emergency room with adrenal failure—my adrenal glands’ function was not even measurable. Adrenals produce cortisol, the hormone that regulates metabolism and blood pressure. If they fail, it kicks off a 24-hour multi-system reaction, which if untreated leads to death 100% of the time. I wear medic alert jewelry so if I’m discovered unconscious, paramedics will know I need immediate IV prednisone to save my life.

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<div>I needed additional surgery to correct a softball-sized hernia bulge in my abdomen. Then I had complications from that surgery. A “normal” GI bug sent me to the hospital and it took four days of IV fluids to get rehydrated enough for discharge, because dehydration for someone, like me, who has had an ostomy can suddenly stop the heart…and also lead to death.

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<div>My body isn’t bouncing back this time.

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<div>Trigger warning for the squeamish on the next paragraph. One of the challenges of this condition is the stigma around bodily function, and poop, frankly. Didn’t South Park call it the liquid sin coming out of your tush?

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<div>So this is the unvarnished truth of it. I don’t poop from my butt. I have a bag. The poop goes into the bag. The bag needs to “fit” or else it leaks (or explodes like the world’s worst water balloon). My bag “fits” fail serially, causing ongoing chemical burns at the ostomy site in addition to random midnight awakenings or sudden mid-day poop explosions. And because I’m cycling through more bags, seals, adhesive remover, surgical sponges, sterile saline, skin treatment than insurance covers - my ongoing poop disasters are not only painful but extremely expensive.

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<div>I can’t go for a walk without a cane because my balance is bad and I experience sudden and overwhelming fatigue. I'll fall asleep in the mid-conversation. I go to bed before my five-year-old almost every night. He tells me he misses me.

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<div>My medical team says I need real, sustained time off of work to heal and recover. With a healed body, I could find my new “normal” and participate again in community life, parent my child, go for a walk. And go back to work.

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<div>But the way our national system works makes it hard to apply and be approved for disability. Even though my condition is listed in the SSDI “Blue Book,” it could take more than six months to a year to even be processed. So I’ve been working—my family relies on my income

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<div>But working is making me sicker. So I go to the hospital. And every time I have to go to the hospital, I go without pay until I get back to work and get sicker again.

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<div>That’s why I’m asking for your help. For myself, for my family, I want to break free from this cycle. I believe that I can. I’m working with some of the best doctors in the country and they also believe they can get me back to health if I’m able to take the time I need to heal.

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<div>What does this look like by the numbers?

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<div>Over the past year, as far as medical interventions go:

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<li>I spent <strong>one month</strong> in the hospital

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<li>I had <strong>52 </strong>doctor’s appointments

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<li>I had <strong>74</strong> nursing home care visits

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<li>I filled <strong>98</strong> prescriptions

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<div>I'm asking for help to replace my income while we wait for a decision on my disability claim. It could take more than a year to process. In the meantime, I’m looking to cover these costs:

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<li>$1450 / month in rent

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<li>$500 / month in medical expenses

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<li>$650 / month in groceries

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<li>$874 / month in pre-k childcare

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<li>$90 / month for electricity

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<li>$40 / month for gas

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<div>We're estimating we'll need approximately <strong>$52,500</strong> to keep those expenses covered through the long SSDI process. And that’s why we need you. Alone, that number is insurmountable. The multiple medical emergencies and the great apartment flood of 2022 burned through our family’s savings. With your help, we can change 2023. I can get better.

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Robin Whetstone

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