<div>My name is Jorgie Ingram, and I’m a dancer, artist, and executive assistant based in New York City. I enjoy watching the light shine through leaves of trees, spontaneous interactions with kind strangers, finding ways to make things seem more possible, writing, finding writing that inspires me, and my close friendships and relationships.
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<div>About eight months ago (in early January), I started developing what I now understand as a seemingly complex chronic illness. It started with fatigue and exhaustion that wouldn’t get better with rest, with sleep, or with the usual things that rejuvenate me, even in a funk. These symptoms pair with nausea, constant facial pain that fluctuates in severity, and brain fog. At first, it was easy to write off as winter, or as burnout, but as time passed, I realized that nothing was helping - and that something was wrong. The things I typically found easy, or could bounce back from even if they were tiring, became incredibly difficult; I stopped having energy to go out and participate in activities I usually enjoy (going out with friends, taking a dance class in the morning before I continued my workday, going to museums, trying a new bar or restaurant, etc.). In April, when I realized it was no longer something I could push through, I assumed it was coming from my wisdom teeth that had fully grown in, and I was soon scheduled to have pulled. I had connected this sensation to one I felt off and on a couple years prior, as they were coming in. I would feel facial pressure &amp; fatigue, sometimes nausea, for a week or so, and then it would calm down and I’d forget about it. I associated these periods with my wisdom teeth coming in - but now realize that perhaps these periods may not have been from my wisdom teeth, and whatever this larger issue is has been going on for longer than I thought.
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<div>In May, I got my wisdom teeth out. They healed, and I had X-rays done a month or so after to make sure (no bone fragments or infection, and the tissue had healed well). When I recovered, and started getting back to my “normal” activities to see if my symptoms had subsided, I had a bad “crash,” and all of my symptoms came back full force. This is when I saw my primary care doctor (who is wonderful). We ran labs meant for chronic fatigue, and to test for a few bacterial &amp; viral infections (including Lyme) and they all came back normal; the only thing abnormal was a *slightly* elevated C Reactive Protein. My PCP is wondering about a diagnosis of ME/CFS, but wanted to rule out all other possibilities first, so recommended I see a neurologist and rheumatologist. I’ve had those appointments recently (in early August), and this is where things stand:
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<div>My neurologist wondered about my symptoms being atypical migraines, but is unsure about my facial pain. She prescribed me Rizatriptan (a migraine medication) to take when I get headaches, but it hasn’t helped. She also prescribed me physical therapy for my cervical spine in case something is misaligned and causing my facial pain; however, the radiologist who reviewed my MRI didn’t note any visible misalignment. Regardless, I’ll be starting physical therapy in the next couple of weeks. I had a brain MRI done, and they found a small “FLAIR hyperintensity” in my brain, but my neurologist is unsure of what exactly it is, is from, or if it could be connected to my symptoms. I have another brain MRI in three months to monitor it.
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<div>My rheumatologist is a bit stumped, and doesn’t think I currently have an autoimmune disease. She ordered more lab work, and some of it came back abnormal; a low C4, a high ESR, a slightly elevated CRP (slightly higher than when I first had it done), and a positive ANA test (the test that indicates autoimmune antibodies are present in the body) at 1:320, and a pattern of homogenous and nucleolar. She thinks this could be due to one of a few things; whatever is happening in my body caused these antibodies to appear, or I’m one of the people who has these antibodies present, and I’m at a higher risk of developing an autoimmune condition, which we’ll need to monitor every year regardless.
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<div>I am appreciative of the care I’ve received so far, though I’m also skeptical that having had multiple abnormal tests come back, that none of them are clues or indicators for what’s happening with me. Thus, I’m currently looking for additional specialists and functional + integrative medicine doctors to provide second opinions. I’ve also found a specialty clinic here in NYC that diagnoses and treats complex chronic illnesses that I’m trying to get an appointment at.
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<div>I have some days that are okay; I can go for a long walk, see a friend for coffee, get groceries, make meals; and I have days that are extraordinarily difficult - my fatigue is too overpowering for me to walk a couple of blocks to the grocery store, or take even a short walk around my neighborhood. On days where I’m in a “crash,” simple things like slowly making a meal can spike my heart rate to 120. I don’t have any indication of what triggers these crashes other than over exerting myself on days where I feel okay; but I haven’t yet found the line, and the grief of feeling like I can’t take care of my body how it needs is often overwhelming and deeply frustrating. I went from dancing professionally and working out, walking around New York City every day, and having fulfilling, enjoyable 10-12 hour days out of the house in the fall, to not being able to get through even a 10 minute workout or a long walk without over-exerting myself.
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<div>I am working on finding the somatic exercises and practices that help me through this, and thankfully am knowledgeable in quite a bit from my education; though this seems like it takes a lot of trial and error. I’m seeing a therapist, and am starting to join chronic illness support groups. I have a really wonderful support system of friends close and far, and family not too far away. Though New York City is difficult and inaccessible in some ways, it also helps me access varied kinds of care; both medical and alternative, and helps me feel close to the world - I can look out the window, or walk down the stairs and be close to people, talk to a neighbor, and remember that life exists outside of my own.
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<div>I come to crowdfunding after a great deal of thought and consideration, and after weighing all of my present options. After realizing how long and difficult of a process this may be, and accepting my current situation, I realized that the amount I have been and will be paying in medical bills and for alternative treatments to see if I can hack into what helps me feel better, will quickly become unsustainable and bring me into a heap of debt. I am lucky enough to make enough to pay for my necessities, and work two part-time flexible and remote jobs, but every medical expense is extra, and I am unable to look for another job at my current capacity. I had to step away from the dance company I was formerly working with, and have lost that income as well. I am fundraising and asking for help to be able to:
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<li>afford more opinions from well-recommended and reviewed functional or integrative medicine doctors who do not take insurance
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<li>afford co-pays and percentages of large medical bills that my insurance does not fully cover
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<li>Afford alternative treatments that I’d like to slowly test to see if they could help me; acupuncture, craniosacral therapy, herbal protocols, etc.
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<li>stay in New York (at least for the next year) where I have community &amp; an abundance of access to care, treatments, and medical professionals, and avoid having to move back home to stay with family in order to afford medical bills and treatments (before it’s absolutely necessary). I love them (I love you guys), and they welcome me openly, but I would lose access to a lot if this ends up being necessary.
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<div>I am so appreciative of anything you feel compelled to give. If you’d like to talk more, or gain a better understanding of specific numbers to understand where your donation is going, I’d be happy to have a conversation.
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<div>If you can’t give financially, but want to support me in other ways, I’m also looking for the following:
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<li>doctor recommendations, particularly doctors with a history of diagnosing complex chronic illness
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<li>resources for free or sliding scale online classes (meditation, Feldenkrais, somatic practice, etc.)
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<li>Recommendations for alternative medicine practitioners
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<li>Folks who feel comfortable sharing this fundraiser with their networks
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<li>……open to other ideas!
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<div>I am aiming to write more, as I’m able; it helps, and I enjoy it. You can read and anticipate to read more creative updates and essays on my Substack, here: <a href="https://open.substack.com/pub/jorgieingram?r=2m57fx&amp;utm_medium=ios" target="_blank" rel="noreferrer noopener"><a href="https://open.substack.com/pub/jorgieingram?r=2m57fx&amp;utm_medium=ios" target="_blank" class="" rel="nofollow noopener noreferrer">https://open.substack.com/pub/jorgieingram?r=2m57fx&amp;utm_medium=ios</a></a>
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<div>I will also share more tangible updates as they come.
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<div>Thank you immensely.
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