Medical Nostalgia

I got my first migraine about fifteen years ago, at Christmastime. I was nine years old, and my third grade teacher was making these gingerbread cookie ornaments for the students to take home so we could hang them on our Christmas trees. The dough was filled with whatever it is that makes gingerbread smell the way it does, and because it was inedible, that dough sat in that room for three full days on end, infusing everything with its potent gingerbread scent. The first day didn’t bother me so much. I just felt a bit queasy by the time I got home. The second day was rough – I was nauseous, dizzy, and my head hurt “a little bit.” By the end of the third day I had all but hidden my head inside of my jacket, trying to protect my eyes from the lights and my nose from that obnoxious smell and doing my absolute best not to vomit all over my desk. Needless to say, I lost my battle with my stomach, and my mom took me home early so I could go see the doctor.

That was my first official migraine.

By the age of fifteen, I started getting them at least twice or three times a month. By the end of high school I was getting them weekly, and I got my first status migraine by my eighteenth birthday. Now, at the age of 25, I have been living with chronic migraine for four-and-a-half years with episodes of status migraine about every six weeks. Actually, I’m on Day 20 of a status migraine right now. Both arms hurt from blown vessels from my back-to-back ER visits, but hey, at least I’m holding down dinner for the first time in four days, and I think I might actually have a shot of developing some abs for the summertime due to all of this vomiting and dry heaving.

My migraines have been getting really severe. I’m 25 and I can’t drive anymore, my memory is shot, and my pain level hasn’t dropped below a 7 in over a year. I live my life based on how far away I am from a toilet or a place to lay down, just in case. It’s gotten to the point that I now have to apply for disability even though I’ve never been physically well enough to hold down a job. And yet, despite my recent periods of existential crises (“Why am I here?” “What is my purpose in life?” “Why do vomit basins have to be made of such unforgiving materials?”), I can’t help but recognize that my life could be so much worse than what it is.

My uncle was diagnosed this year with hypersensitivity pneumonitis and bronchiectasis. Basically, his lungs were exposed to black mold during Superstorm Sandy, and now the mold is growing in his lungs. His bronchioles have turned into mold trees – in his lungs – and he has less than two years to live if he’s lucky. He was listed for a single lung transplant a few weeks ago, which unsettles me because this disease affects both lungs and they’re only willing to fix one lung (the healthier one, at that). There are so many unknowns floating around in my brain and there are parts of me that are too scared to learn the answers to my unasked questions.

So I’m clinging to my trusty toilet, complaining to God about the fact that the ER doctor and my migraine specialist are playing a game of “responsibility ping-pong” and how neither will admit me for a DHE infusion (which is what I need to get better, which is what they did after my 30-day status migraine back in August, which is what WORKED), and I’m basically shivering from allodynia and my pain being so uncontrollably high, feeling like my skull has fractured from blunt force trauma, when my mom comes into my room looking like death washed over and proceeds to tell me that my uncle’s transplant came through.

He’s being prepped right now for surgery. He goes under the knife at midnight.

And I’m too sick to be with my family and support them through this “milestone”, to offer hugs and kisses and to be the charming granddaughter that everyone loves and expects of me. Instead, I’m laying down on the bathroom floor, fighting uncontrollable pain, clinging to the toilet and waging war with chicken noodle soup.

And of all the innumerable thoughts that are storming through my brain right now, in the midst of the prayers and the bargains and the cries for help for my uncle, I can’t help but wonder when he recovers from this (because he will recover, he will heal from this, he has no other choice but to heal from this) what sorts of medical nostalgia he’ll experience at Christmastime. I always remember my first migraine at Christmas, my first ER visit, my first MRI, my first trip to a neurologist – they all fell around Christmastime. I wonder if my uncle will remember his diagnosis, because it fell at Christmastime too. His lung transplant will fall at Christmastime. He’ll look at the scars on his chest and remember the pain and see those etched lines as bookends to this part of his life, just as I see my PICC scars and Botox eyebrows as bookends in mine. He’s six feet tall and has dropped nearly sixty pounds, and I’m five feet tall and gained fifty pounds – both of us due to medicines and changes in eating habits due to our conditions. We both have trouble talking on the phone – me because of my sensitivity to sound, he because he literally cannot breathe. I wonder when we both recover if we will look back on these times in our lives and remember the days when we could not do these simple things and think to ourselves: “I made it through this.”

Illness has a way of making an individual feel a sense of nostalgia. Or maybe, nostalgia isn’t the right word. Maybe it’s just sentimentality, or remembrance.

I just pray to God the word isn’t melancholia.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • anphelps31 author
    4 years ago

    Oh gosh, this got published! Sorry for my delays in replies, what with the holiday season and all. I spent most of mine in bed and had to make another trip to the ED because of my pain and vomiting. I’m starting to wonder if I might be transitioning into cyclic vomiting syndrome, and that’s a thought (among others) that I will be bringing up to my follow-up on the 13th.

    Katie, your article on the faces of migraine brought me to tears. It is part of the reason I enrolled onto this website – because there were people here who understand the struggles, and your journey has been so remarkably similar to mine in many ways. Whereas your family calls your memory recall struggles “pulling a Katie,” my family refers to my near-constant dysphasia as “dumb tongue” which, when you say it fast enough, sounds like a bad Chinese take-out order. I am seeing a great migraine specialist, but I just started seeing him in November, so there’s that requisite acclimation process of us getting to know each other. He hasn’t discussed a rescue plan with me, and I’m guessing it’s just because he doesn’t know my case well enough, but that’s a subject I will be broaching soon. I’m considering going up to the Jefferson clinic just because of the severity of my nausea and the near-constant 8-out-of-10 pain that I’m dealing with. I need to find a medical team that will help me, and quick, because I’m starting to enter back into a phase of migraine pain that’s eerily similar to one that laid me off my feet entirely for close to five months. I refuse to let that happen again.

    The transplant went well! He’s breathing on his own, no incubator, but unfortunately he has to be on such high doses of prednisone that it’s causing psychosis. My normally teddy-bear uncle, my “Mr. Rogers” has been trying to yank out his IVs and has been just plain mean to the nurses and apparently, he punched an anesthesiologist. And he has partial paralysis of his vocal cords, and they’re testing that tomorrow to find out why. He’s not eating, just getting IV nutrition, but once he eats, he can go home. No pain meds at all. I’m counting that up as a miracle from God.

    Rusalka, thank you for your concern! My grandmother made that chicken soup from scratch actually – I don’t go with the canned stuff for the same reasons, e.g. MSG, artificial preservatives, high sodium. She’s full-blooded Puerto Rican (I’m half-and-half, haha), she’s an amazing cook, and she makes it bland with rice, peas, carrots, and chicken breast basically. And it’s soooo good. Comfort food, really. I’ve been trying to do a really strict “migraine diet” with no preservatives, everything fresh, no caffeine/tannins/dark fruit and things of the such. I had a mini-meltdown earlier actually over not being able to put chocolate syrup on ice cream I was having with a white chocolate cake that Abuelita (spanish for “grandma”) made. It’s the little things that migraines take away that seem to affect me the most emotionally – a morning cup of coffee, Salsa dancing, cantaloupe, the ability to drive. In a word, it sucks.

    I would love links! Education is my friend. I actually asked for a clinician’s guide to biofeedback as a Christmas gift because I want to learn more about it since there’s not a single practitioner closer than a 90-minute drive from me. I even got a stress thermometer to just see if any of this might possibly help me.

    Luna, you couldn’t be more spot on. I tend to joke around a lot when I’m sick. Unfortunately EMS and ER docs don’t quite understand that many chronic pain patients use humor as a coping mechanism to distract from their high levels of pain. That won’t stop me, though.

  • Katie M. Golden moderator
    4 years ago

    anphelps31,
    Thank you for sharing. Your story was extremely well-written!
    Don’t feel bad about not being there for your Uncle. More than anyone, he can sympathize with your condition. While the two conditions aren’t the same, the way your daily lives have been impacted are very similar. I hope that his surgery is successful.

    You seem very well versed in your condition and are a good advocate for yourself. The only advice I can offer is to make sure you are seeing a Headache Specialist, not just a neurologist (http://migraine.com/blog/how-are-migraine-specialists-different/) and potentially getting into an in-patient program.

    During the midst of an awful Migraine attack, it can be hard to be forceful with the doctors in the ER because you just want instant relief. Have you tried to call your normal doctor and asked that he/she send instructions to the ER on what they should do for you (ie DHE infusion)? Sometimes that helps.

    Best Wishes!
    -Katie
    Migraine.com Moderator

  • rusalka
    4 years ago

    I consider myself lucky as I was staying on Long Island when superstorm Sandy hit & my boyfriend, his house & I survived unscathed. I knew about people having flood & subsequent mold damage but was completely unaware of the condition your uncle has. He’s lucky to have such a thoughtful,well-spoken niece who cares as much as you do about him! I pray he makes a swift and complete recovery. I was wondering about the chicken soup you’re eating. Most canned soups have some form of msg(it causes hellacious migraines for many of us). Unfortunately,even if the can says “msg free” there’s a very good possibliity that it has an msg derivative in it. Just a couple of examples are;yeast extract, anything that follows the word “autolyzed”or “partially hydrogenated”,caseinates and,yes! There’s more! I’ll try to find the link to an excellent article I found that lists these chemicals that too many companies use to enhance flavor. You’d be really surprised! I also now have an embarrassingly bad memory from the amount of migraines I get more migraines than I have days without them lately. I considered myself reasonably informed about treatments but have never heard of some of the ones you mentioned. Anyway,it’s a really good idea to eat foods that are as unprocessed as possible. The less ingredients on the label the better! Stay hydrated(I know it’s difficult if you’re nauseated) also & try to rest. I know it’s hard to have a loved one in the hospital. My boyfriend was in the ICU exactly a year ago & I had to remind myself constantly to take care of myself so I could be there for him as his medical proxy. Sending you & your uncle wishes of health & peace….

  • Luna
    4 years ago

    There are many times that I can’t be there for my family but others can be and fortunately they understand. Then there have been times that I’m the only one that can be there for someone and they really appreciate that.

    I’ll vote for nostalgia because …
    According to Hippocrates and subsequent tradition, melancholia was caused by an excess of black bile,
    I refuse that one.

    Keep your sense of humor, it helps.

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