"Into every life a little rain must fall..."
But what do you do when you feel as though you are constantly undergoing a torrential down pour that just doesn’t seem like it will ever let up? When you’re soaked through, past your skin all the way to the bone? When you are waist deep in a mud puddle the size of Texas but it seems to just keep getting bigger and sucking more and more of you in with each passing minute?
For many people – this is what life is like living with a chronic illness.
For me, personally, this has been the story of my life for the past 1.5 years.
I remember feeling sick on December 10, 2017. I had a headache – not a severe one, but enough that I was bothered by it. It was late afternoon and I brushed it off to a combination of dehydration and stress from being in the midst of finals week. I couldn’t worry about it – I had term papers, projects, exams to study for, and violin practicing to do. Life was coming at me 100 mph and I couldn’t slow down.
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On December 11, 2017 I woke up feeling better and didn’t have a second thought about the previous days’ headache…until it returned that day, mid-afternoon. It was the same as before – so I laid down, took a nap, and when I woke up, it was gone. Bam – must be end of term stress and lack of sleep. Problem solved.
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Until December 12, 2017 when the same headache returned, again mid afternoon. By this point I was beginning to be irritated. “It’s the end of the term – I can’t take naps every afternoon!!!” But I laid down for a nap, and sure enough – when I woke up an hour later, the headache was gone. So, I chalked it up to exhaustion and vowed to get more sleep later that evening.
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December 13, 2017. I bet you can guess what happened. The headache returned. It wasn’t really responding much to ibuprofen so I tried different types of Excedrin, trying to pin point what exactly was causing the headaches. Maybe I needed glasses? Maybe it was postural? Maybe it was a combination of extreme fatigue/stress/school/tension/etc?!
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On December 14, 2017 I saw my medical doctor for a routine follow up appointment and I mentioned the headaches to her. She told me to start taking magnesium at night before bed and to be sure I was drinking enough water and that I made getting 8 hours of sleep a priority. We talked about some postural things that could potentially be going on and I walked out of her office hopeful that we could nip this in the bud. I had a life to live and this could NOT keep going on because it was beginning to slow me down.
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The headaches kept coming…every day around mid-late afternoon. They would disappear if I took a nap, so that was usually what ended up happening. They came on suddenly and were unresponsive to any type of over the counter medication. I was irritated, of course. But kept searching for solutions – maybe I was allergic to something in my apartment? Maybe I needed to do more yoga or see a massage therapist? Maybe I just straight up needed to catch up on a semesters worth of sleep?!
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I went home to my parents house for Christmas break – the plan was to take it easy, relax, enjoy family time…and see my eye doctor. Per usual, the headaches persisted even with the change of environment, the increase in rest, and…the 20/20 vision that it was determined I have. However, my visual fields test came back “borderline” but I was assured that it wasn’t anything to worry about.
Back to school I went after 2 short weeks of rest, relaxation, family fun, and celebration. The headaches persisted and were slowly getting worse – longer in duration and higher on the pain scale. I returned to see my PCP on January 16, 2018 and she promptly ordered an MRI.
Let the games begin. The insurance games, that is.
Why is receiving treatment so difficult?!
It seems like once you get over the hurdle of getting in to be seen by a doctor or specialist, then you have to fight insurance battles over and over – sometimes unsuccessfully, which then leaves you with daunting medical bills which become a burden to you and your loved ones.
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Prior to this current battle, back in 2014 I was hospitalized for severe anorexia for over 3 months. I was only there for 2 days before insurance TRIED (thank goodness, unsuccessfully) to pull and send me home. However, I had a wonderful medical team there who was fighting on my behalf and was able to convince them week by week to keep covering my treatment costs, but I still got sent home approximately 6 weeks before my medical team advised my leaving. And those first 3 months of treatment cost upwards of $100,000.00 – thankfully only 10,000.00 of which my parents had to pay out of pocket.
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With this current battle with intracranial hypertension we’ve been relatively lucky. Insurance has covered most of the requested tests and scans with a few exceptions. And they covered 12 days in the hospital last May which added up to about $30,000.00. So far, my parents have invested in this headache related issue to the tune of almost $50,000.00 (about $10,000.00 of which has been out of their own pocket). I am endlessly grateful for their financial support because I could not have received any of the medical help I’ve gotten without both their willingness to foot the bills as well as their willingness to keep me on their insurance. But to this very day, I can not figure out the hurdles insurance puts in our ways as consumers. If a doctor requests a test or scan it is because they believe it will be helpful to their patient – so why not help cover the costs?! Wishful thinking, I know!
It’s been 436 days (and counting) since I had my first headache. During that time I’ve been on a medication roller coaster (or 100!!). I’ve seen countless doctors and medical professionals. I’ve had an MRI, MRV, MRA, x-rays of my neck and back, a lumbar puncture, etc. I’ve been seen by my primary care, a psychologist, an optometrist, a neurologist, 3 different headache specialist, an ophthalmologist, a neuro-opthalmologist, holistic doctors, and was even hospitalized in April for almost 2 weeks where I was on over 28 different medications, total – all which yielded no results.
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I remember throwing up in a bin next to my hospital bed – the medications making me so nauseous I could hardly breath. I remember the way I had to cling to my mom to help me walk out to the car when I was discharged – afraid to tell the discharge nurse just how badly my head hurt for fear that they would try to keep me another day. I remember the fear and the guilt and the shame I felt upon finding out that my parents have received medical bills adding up to over $40,000.00. And I still have headaches.
The meaning of the word: treatment.
To experience all of that and still be sick triggers immense feelings of hopelessness. To feel as though you are somehow inherently broken or “unfixable” is a very scary place to be. I was in one of the top 10 headache treatment facilities in the country for almost 2 weeks and they couldn’t figure me out – could anyone?! My perception as to what constitutes “treatment” has shifted dramatically over the course of the past 1-2 years and is still continuing to shift as I walk through this journey.
Dictionary.com defines the word “treatment” as a noun meaning: the application of medicines, surgery, psychotherapy, etc, to a patient or to a disease or symptom. At some point throughout this struggle, the line became blurred – am I the patient or the disease?! Am I a patient being treated for a disease or am I a disease receiving treatment? And how can I receive treatment for my disease that it seems no one can really figure out or get any real grasp on?!
There have been many times where I’ve interacted with medical professionals who have somehow made me feel that I am the disease and they just need to sort through all my symptoms and put the pieces of the puzzle in place and everything will be good. But I’m not a patient whose symptoms fit within any specific puzzle and so, there have been many times that this has prompted feelings of helplessness, hopelessness, and despair for me and my family. Not to mention – aggravation. I know how to use google and often times am capable of coming to some of the same conclusions I’ve paid medical professionals thousands to get to themselves (and I’ve gotten to them faster, at that!) It’s extremely frustrating and invalidating to feel as though you are not being heard, that you aren’t understanding your own symptoms or experience (because a doctor is trying to cram your experience into a category in order to come up with an answer that simply is not there).
I had a minor case of shingles and then a month later the whole headache debacle started. After spending almost 2 weeks in the hospital, I was formally diagnosed with “Benign Intracranial Hypertension” and although, there are still doctors to be seen, test to be run, I am trying to maintain hope moving forward.
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But mostly, I am hopeful because these past 18 months have been some of the toughest of my life. I have been angry – not understanding the hurt, fear, and pain that I’ve felt a lot of the time. I have felt confusion and bitterness and sadness. Despite all of that, I am clinging to hope with everything I have in me…and learning so much through the process: patience, endurance, hope, prayer, asking for help, leaning on others, forgiveness, sacrifice, love, family…and an abundance of other things I can’t even begin to list.
