Dear Hospital CEO: a letter finally sent

Last year on March 1, I had an unexpected and devastating visit with the DO who had taken over as my primary care physician. She had done a lot for me: set up my first mammogram, referred me to an amazing pain specialist, and while I was in a CGRP study prescribed the other migraine meds I would need. I was completely blindsided when she began attacking me that day about using the ER and I left in furious tears. When I was finally calm enough, I wrote a blog entry / letter to the hospital (at which I was and am always treated extremely well) called “Dear Emergency Room” (addressed to the CEO of the hospital) in which I poured out all my agony and grief at the confrontation and explained why emergency care had become part of my migraine protocol.

I realized right away I could never send it. It was a perfect blog post, but way too emotional and long to be used as communication with someone whose help I was going to keep desperately needing. I did ask A, the study coordinator, to write the hospital a letter on my behalf, especially to state that I always reported my ER visits to her, since that was one of Dr. S’s main points, she claimed, that I didn’t follow up with her each time.

Since it took me so long to be insured and am still struggling with that issue, I never did file a complaint about Dr. S. When I finally made an appointment with a new family doctor, that didn’t go too well either. He made me feel uncomfortable and asked for details about why I left my former doctor. I feel like I am trapped as I can’t keep making appointments with new doctors until I find a good one.

Anyway, after my recent hospitalization I planned to write the hospital CEO a different letter (email), to express my appreciation for one of the nurses I’d had. It was nice because some of the other things I wanted him to know and had stated in the previous letter, I was able to express, finally.

Here is the letter.  Some names have been obscured for privacy / non-disclosure purposes.

Dear Mr. K,

Hello! You may not remember me – we aren’t well-acquainted, but I used to work at the Community Center and I have a daughter who has danced in the Nutcracker with your daughter since 2014, and we have greeted each other at both places. My name is Elizabeth, and I have chronic migraine disease. I am a featured writer / patient advocate on migraine.com, so as I experience issues regarding my health I often begin writing about them in my head as they are happening. There is a very long narrative of how I got from my first ER visit Wednesday after a week of severe pain to being admitted, but the part I want to share with you is regarding the amazing nurse I had Thursday night on the second floor, Sheryl.

Since 2014 I have been involved in clinical trials for the new CGRP antagonist medications through Amgen and Xxxx. I have been doing everything I can to control my pain at home, but frequent ER visits have been necessary, and the staff at WCH have almost always treated me with the utmost respect, concern, and care despite national confusion over how to treat chronic pain. The doctor I felt had the most trouble understanding my situation, Dr. “Black”, is actually the doctor who admitted me early Thursday morning. I hadn’t seen him in a long time and he was very kind, and when the treatments we tried at that second visit within 24 hours only lowered my pain from a 10 to an 8 and I was still vomiting, it was decided to admit me. I was so grateful that he was willing to do that.

At that point, I was in a nearly-empty ER and when I was moved upstairs, I was the only one in the hall. I was in a tremendous amount of pain, and the nurses who registered me were that perfect combination of kind and efficient. I was brought an eye mask, ear plugs, and an ice bag and they made sure I was given more medication as soon as it was possible. Soon there was a huge influx of patients as the hall filled up. Nurses were running everywhere, I didn’t see my doctor again as expected, meds were late, and other nurses were called in to work as the “other wing” was opened up (I learned later). Even then, the current RN, Sarah, remained kind and calm and when I wasn’t able to be seen to right away with IV or pain issues I knew it wasn’t her fault.

The nurse I had in the overnight hours from Thursday to Friday morning, however, seemed to have almost super-human powers. Her name is Sheryl Xxxxx. I was still in a lot of pain, but had moments of clarity when I became aware that though I had seen Dr. Mxxxxx once and the hospitalist, Dr. Dxxx, once (who said he’d never met anyone with migraines as severe as mine), there was no plan in place that I knew of to get me home. Without my asking her, Sheryl, as busy as the floor was, began working behind the scenes. She learned that my medications from home hadn’t been ordered and that Dr. Dxxx had left, so she asked a PA to order those so they would be in place. She also had it approved that I could be given another Imitrex injection so that I would be receiving something other than the regular pain and anti-nausea medication for migraine, which was exactly what I needed and hadn’t yet been able to discuss with anyone. (Getting rid of an intractable migraine for me is like getting rid of a tree, and both the roots and leaves need attended to. Imitrex would work on the roots, and pain medication, the leaves.) I don’t think she knew that precisely, but her thorough attention to my records and other prescriptions meant that the building blocks for my improvement and release were in place.

Meanwhile the IV I had been given in the ER was pressed against a valve in the vein and was in the crook of my arm, so my IV machine was constantly beeping angrily which was extremely detrimental to lowering of pain (sudden loud noise). Sheryl re-wrapped and taped it a couple of times, and also examined veins lower in my arms to see if she thought a new IV could successfully be started. She determined she didn’t think it would be a good idea to start a new one because I was still dehydrated, and I appreciated her honesty and attention to those details and my comfort. So she re-wrapped and re-taped again.

My worst moment was waking up in the dead of night somehow soaking wet because apparently I had drooled or something all over my hospital gown. My arm hurt and when I looked down my hand and lower arm were grotesquely swollen and I basically started to freak out. I was gross and confused and still in pain and I paged the nurse crying, asking for Sheryl specifically because she knew exactly what was going on with my arm. When she walked in, I apologized and I think called myself her “freak patient,” and she made me feel immediately like everything was going to be fine. She peeled off the gross hospital gown and helped me get on a new one, and admitted my hand looked pretty awful, but said, “You know, I think it’s just because of how tightly it was wrapped.” She unwrapped and untaped it again, re-did it looser and propped my arm up differently so all the blood wasn’t going to my hand. She saved that bad IV over and over, while making me feel somehow NOT ridiculous. I was able to doze off again, and the next thing I knew she was back with pain meds because it was time and she knew I’d had to wait a long time twice the day before. Once more, she delivered meds on time and my pain for the first time edged below 5. I had begun having withdrawal effects from my Zoloft because I’d been too ill for several days to take it at home, so the fact that she had arranged for me to have it that morning felt miraculous, as did the fact that I would soon have another Imitrex injection coming.

When Dr. Dxxx returned in the morning, it was because of Sheryl’s hard work on my behalf, before I could even properly advocate for myself, that I was in good enough shape to talk to him in a more coherent way. He told me he’d meant to have me receive another Imitrex injection the night before as well, but that hadn’t been communicated. He said that he would prescribe another IV treatment of Decadron (I’d had one dose in the ER) with the Imitrex, and with those delivered together my pain went down to zero and I was able to be discharged late that afternoon.

Sheryl’s treatment of me during that hectic (for her), scary gross and painful (for me) dead of night time was so above and beyond what was required of her. I was probably a very low patient on the totem pole of needs, yet she never made me feel I was taking up her time with my weird IV situation and invisible head pain. She was efficient and reassuring, and made sure I was comfortable. In my 30 years of being chronically ill, I have had to deal with countless nurses and doctors and lots of different kinds of medical professionals in myriad situations. Sheryl is the best nurse I have ever had. I hope that somehow she can be recognized for her excellent care, because I can’t be the only patient she’s positively affected both by paying attention to detail and being extremely kind. Sometimes a nurse will be good at one of those but not both at the same time, and Sheryl really was.

That said, every staff person in the ER and hospital I worked with from Wednesday through Friday was caring and respectful. I think that it is tempting to judge a hospital by its cancer treatment, or surgical center; but I think a better baseline to use would be how it treats its chronic pain patients. I deeply appreciate that whenever I come to Wxxx County Hospital, I know I am going to be treated like a human being in pain who is worthy of kindness and care.

Sincerely,

elizabeth

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The Meds of Medusa

As my neck is still horribly stiff and painful in a way that feels connected to the 9 day old migraine that was finally obliterated on the second floor of Wood County Hospital Friday morning at 10 am, I am sitting here thinking of the amount of medication it took to truly break it. In a way, this isn’t the most accurate way to think of it – 1 headache, 29 doses of medicine. Many with chronic pain will never feel a “0” on the pain scale again in their lives, but I do, and often. My migraine attacks are still able to be identified as individual episodes. The seven days prior to my first ER visit Wednesday, I was able to keep the pain low enough most of the time with Imitrex or Fioricet and Zofran tablets and over the counter helpers like Dramamine and Benadryl and Sudafed to function, just not happily or well. But then Tuesday I went down hard. I used the last of my imitrex injections. I used phenergan suppositories. But my pain shot up and up in a way it has only once or twice since the beginning of my first clinical trial in 2014.

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My hospital room with its gorgeous photo of Conkles Hollow (Hocking Hills)

Total meds given to me in the hospital / ER for severe pain and vomiting from Wednesday at 5 pm until Friday at 1 pm:

– 5 liters of saline solution

– 7 individual doses of IV Zofran

– 10 individual doses (mostly 1 mg) of IV Dilaudid

– 1000 mg of IV Tylenol (to boost Dilaudid, like my own hydromorphocet cocktail)

– 3 subcutaneous injections of generic imitrex (6 mg each)

– 3 individual doses of IV steroid Decadron, with 5 days of tablets given for home.

Guys. That is a lot of medicine.

It would be insane to recount everything I took in the week leading up to the ER visit. You would think I wasn’t safe or reasonable but I assure you, I was both. A lot of physicians and others in the migraine community, patients included, might think that I am continuously only making myself worse by getting through the day, each day I can, by taking varying sorts of medications for migraine and pain. “What is this rebound effect I’ve heard of?” You might muse.  Or: “If the medications don’t work, why take them?”

I honestly think that this is what makes it more fucked up: they DO work.

This disease, MY migraine disease, WILL OUT. Medusa finds a way. When my family doctor went off on me last February for too many ER visits, I composed a history here of every single treatment, acute and preventive, that I have tried (it might be called Dear Emergency Room). Everything ever available or suggested for migraine from the early 80s until now is on there. If I had been told to try trepanning or leeches, I would have. 30 injections of botulism toxin into the skin OF MY FACE AND NECK!!!!  6 SEPARATE TIMES!!!! You think a single hole in the skull sounds bad or weird? Or bleeding the humours? What is the difference? Acupuncture, hypnosis, chiropractic, electrostim, hysterectomy.

Yeah, I take a lot of medicine. I am very happy to do so. For the last three years, when not in the midst of CGRP treatment and sometimes when I was, every 4-6 weeks everything stops working. No matter what. I go to the ER to break the ones I can’t. And start over again. Now, the medication part of my second trial finished, I am in even newer territory.

I am almost 44 years old. I took “safe” NSAIDs constantly my entire life until I gave myself an ulcer in 2012 and even then I didn’t stop, I took the Protonix that was prescribed for it and kept on keeping on, because I had migraine attacks or in-between-attack headaches every single day. I had a job to do, and / or school to finish, and / or kids to raise, but certainly a life to live, and it was the only medicine I felt I could safely take more than 3 days per week. But then my iron dropped so low I literally couldn’t do any of those things anyway, so no more NSAIDs. I got a month of iron infusions and still take Protonix for the damage. That was from the “safe,” often OTC med that was least likely to cause “rebound.” The most dangerous medicines to me have been those bought while grocery shopping. I had to detox from Excedrin in the hospital soon after John and I got married.

When I lost all of my harder to get medications in an unfortunate doctor switch in 2013, I had to do the work of trying to use fewer because I didn’t have a choice. With just imitrex on hand, I saw my old hard driving expert neurologist who said that was all I should need. Magnesium supplements, any type. Imitrex injections, use before tablets. I went to physical therapy. I went to biofeedback and talk therapy. I took a chronic pain class. And I ended up getting a migraine that rocked my 1-10 pain scale and scared me so much that I swore off the swearing off, but my neurologist’s assistant said, hmm, maybe a weird reaction to something. Maybe cluster headaches. Try oxygen. Oxygen, Magnesium, imitrex, outpatient DHE  infusions. I agreed to try. It didn’t work.

Oh, and she also said this: “Your treatment is in God’s hands.” Which isn’t a belief system I prescribe* to.

I found my own way. I found a pain management specialist. I continued doing the therapy and biofeedback. I was recruited into a clinical trial. After the family doctor debacle mentioned above I found a local neurologist who would  treat me with respect and understand I was not looking for a cure or even expecting to no longer be chronic. But I did get my life back.

I may lose it again yet. I regain and I lose every five years or so, it seems. But I have been down every road, and I know what it takes for me to live and be happy and not be forced to spend 75% of my life in bed. So yeah, I take some medicine or another every day. It’s definitely not recommended for most with migraine, and I wouldn’t recommend it myself, to someone else, but we all take our own circuitous route to treatment that works.

The hospitalist said Thursday he had never met anyone with such severe “migraines” (migraine disease). I know so many people like me, with their own types of extremely severe migraine, some of them personally now. They fought their own battles to live, to get where they are, and now most are advocates like me. The hospitalist said, “We do not have DHE but we will use our entire arsenal if we have to, to get your pain reduced.” At that moment I was sitting there with purple and silver hair standing straight up, tear streaks down my face and heating pad burns on my forehead, in a green #UnionStreetStrong (Athens) t-shirt undoubtedly splattered with vomit, an IV poking out of my inner elbow right next to a Darth Vader tattoo, and this doctor looked at me with real respect.

Thank you, sir.

This was a very expensive migraine attack, though, you see? And my NECK STILL HURTS. That isn’t good. It either means that I shouldn’t get too comfortable… or that I just literally can’t get too comfortable. It could be part of postdrome, still. Or a combination of steroids (though the tablets help the neck pain so probably not), constant dry heaving and vomiting up bile for 8 hours, and a hospital pillow. And holding my puffy IV arm in a bizarre manner to avoid setting off the occlusion alarm.

Or I could wake up in the morning with that boomerang of fucking burning-ass pain slapped back into place over my right eye.

Which is it?

What will happen?

What?

Selective amnesia. I live.

I win.

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The surprisingly tight mesh weave to hold my IV in place. The IV is the same color as Vader’s lightsaber, which is on the other side.

 
*channeled Carrie Fisher with that one.  🙏🏼

Mix Tapes: The Buckle and The 8th Floor, 1997 (20 Years Later)

I am going to add to this entry now. When I first wrote it, I was thinking more about The Buckle and writing for a more general audience, even though I was already discussing really personal things. I just didn’t want to get into the details of my hospitalization that followed.

I just turned 44. It is now the twentieth anniversary of my week on the 8th floor of Toledo Hospital. The psych ward. I was there on my 24th birthday. Now, I want to write about it. It was an important part of becoming the person I am.

I recently got a 2002 RAV4 from my mother-in-law, and I have never loved a car so much. I have always wanted a small SUV, and she kept it well maintained, so even thought it has over 200,000 miles on it I feel it will continue for many more.

It also has a tape deck.

Earlier this year I bemoaned my lack of ability to play all my old mix tapes, which were like an art form for me. A friend had an extra boom box which she promptly delivered, and I imagined writing a new blog post for each new mix tape I rediscovered.  However, that never happened. The boom box sits in my room, with old dust and new dust.

A car tape deck though is a different matter. We all have to drive. I like to listen to music while I drive. I waited awhile and then, last week, I grabbed some tapes from my collection and popped the first one in, unlabeled, which turned out to be a taped-off-the-radio George Michael concert from the FAITH era and pieces of favorite albums (The Beatles, Led Zeppelin, and sadly, Boston). The tape survived being flipped and re-wound, and played well, so I listened to a couple more. I posted on Facebook about them.

A friend (one of those FB friends I’ve never met in person) commented how much he was enjoying my Tape Updates, and I thought again about possible blog posts. Facebook seems much easier, less time consuming. There is also the privacy of those for whom I made the original mixes to consider. But this particular tape, which was made just for me, Mix Tape #4 according to its Facebook post order, definitely needs its own blog entry, as it represents such a personal and important crossroads for me, along with its sister mix, “The 8th Floor,” made soon afterward.

The mix is called “Buckle Songs”.

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In February 1997, I quit my job at STAGE Stores Inc, which had been Uhlman’s Department Store until the sale / takeover. It was not nearly as enjoyable as Uhlman’s had been, particularly since, as an old fashioned Southern chain (one I learned during the presidential race of 2012 was owned by Mitt Romney), they told me I could no longer be manager of the Men’s Department. Because I’m a woman. And my fancy gold-plated five year badge with my full name and DEPARTMENT MANAGER on it was replaced by a cheap one with a sticker that said simply “E. Roberts.” No first names.

I’d also dated a co-worker with disastrous results (a man hired to work the Men’s Department!), and though he’d quit already, I had fallen hard for him and being back there was rough. I had graduated from college in December. I was ready to go. I spread applications to retail outlets all over BG and Toledo, because working retail was all I knew, and I liked it. Who called? The Buckle, a trendy clothing store at Franklin Park Mall, a 40 minute but very familiar drive north.

Because of my degree and experience I was hired to be a sales associate on track to become Assistant Manager. Tish, the manager, was very like other female bosses I’d had, though younger. She was sharply enthusiastic, and nerve-wracking. We were on commission. We were expected to “build on” sales, to not just help people find what they were looking for but also talk them into buying more. We were trained to look out for the types who were easiest to do this to. We got a 40% discount on clothes and could only wear what was purchased from the shop. My collection of Doc Marten boots and shoes, and Lucky Jeans, and thin, cheap, trendy tops would become monstrous. We’d all have “hold” piles and when paychecks were issued there was a long line to purchase. My sales were never high enough to begin the process of promotion to Assistant Manager, though I was a key holder, as I’d been at Uhlman’s / Stage. My migraines at this time were occasionally disruptive but I didn’t have to miss so much work that they were a real problem. I wouldn’t become chronic for ten more years, though I was definitely heavy episodic.

My relationships with my co-workers were pleasant, but I felt odd and out of place. Another key holder had dubbed The Buckle “The Meat Market of the Mall” as everyone who worked there was rather astonishingly good-looking, and easily classifiable into a “type.” My favorite co-worker was Jeff, my first flamboyantly gay friend, who was funny and sweet and danced like he was in a musical whenever “It’s Oh So Quiet” by Björk came on. There was the guy I had a crush on, Jake, who looked just like a Jake and was therefore not really my type at all. There was also Vinny, I think his name was, unless I just called him that in my head. He was sort of a combination of Keanu Reeves’ Ted and Alan Rickman’s Severus Snape, in retrospect. He had long shiny dark brown hair and loved the Wu-Tang Clan and tended toward the more “urban” line of Buckle clothes like JNCO jeans. The girls  were young and beautiful, from the one with long flowing wavy blonde hair to skinny, alternative types. [As I finished writing this the first time, I began to remember a more interesting and diverse staff (see update #1) but it is still true that everyone was exceptional in the looks department.] I had no idea where I fit into this schema. Since I’d been hired into management but stalled, I suspected I fit nowhere.

The best part of this job was, oddly, the music. We had lots of CD playlists to choose from, and they were all good, introducing me to some new things and re-affirming my love for The Beastie Boys, Björk, Liz Phair, Radiohead, Depeche Mode, Beck. Some of them were more club oriented and therefore totally unfamiliar, and I was able to track down my favorites for the mix: “Whoever You Are” by Geggy Tah (“All I wanna do is to thank you, even though I don’t know who you are / You let me change lanes while I was driving in my car”) and “(C’mon Ride It) The Train” by Quad City DJs. When these songs came on we would dance and sing unabashedly. There were 1980s mixes as well, both alternative and dance styles. The Buckle, not a bar or wedding, was the first place I ever saw the “YMCA” dance being acted out. Working there felt more like working at a club, but instead of drinks people bought clothes, shoes, and belts. Despite the underlying competition of being on commission, we all got along pretty well, though the social and friendly environment was not extended for me outside the store as it probably was for the others, who were mostly one to five years younger. I was about to turn 24.

This was the time period of a major self-destructiveness on my part. My life, private and professional, was a mess. I had dumped Craig, my longterm on-and-off boyfriend, the previous fall for the last time to date Hazelwood, the guy from Stage, who  in turn had dumped me over the phone right after Christmas. The relationship with Craig had been a seven year tempest of fighting, reuniting, being unofficially engaged and then breaking up and getting back together, hanging out and hooking up without commitment, though every time, it felt like coming home. I had no idea what I wanted to do with my life, and who to do it with. I thought I wanted to be with Craig, but I always thought that when we were apart. And I knew The Buckle wasn’t the right place for me but had no motivation to do anything about that. So I did stupid stuff like driving around the parking lot during lunch breaks with Vinny, in his car, blasting music while smoking weed and menthol cigarettes like that was our actual job before returning to work the rest of our shift. I let some stranger “pick me up” at the store, and dragged my friend and her boyfriend to his house, which was a glass and white monstrosity in northern Toledo at which he turned out to just be crashing. I remember there was weed spread all over the glass table in the living room, and I suspected there were other drugs tucked elsewhere. We smoked this weed. I went back by myself next time. The guy, Derrick, was a drifter with a temporary type job, but was actually pretty clean and cute and ended up not being a crazy asshole or rapist or killer; he didn’t slip Rohypnol in my drink, didn’t poison the food he made for me or get angry at my “everything but” reticence. In fact when I declined to see him again he seemed extremely crushed. I got lucky there. I also invited a random kid into my apartment when he knocked on the door looking for someone else, and smoked his weed too. I smoked so much weed belonging to strangers and near-strangers that it is astonishing I never stumbled upon any laced with anything. 

More emotionally significant than any of those encounters, I went to visit a good friend from college whom I’d always been desperately attracted to. It was mutual, but our timing had always been off and we had never dated. We consummated the five year intense flirtation very anti-climatically, but still I foolishly thought we would be together after that since we were both finally single. Which would mean we’d have lots of opportunities to improve on that score. But no. He said he considered it a logical progression of our friendship. And those migraines, he said. I don’t know if I can handle how sick you get. I told him that as far as I was concerned our “friendship” was over for good. To this day it remains my only true one night stand, which seems ironic to me because I loved him. I was devastated. My downward spiral got deeper and deeper.

I know this “risky behavior” is somewhat laughable. Even in the late 1990s it was known to everyone that marijuana is spectacularly safe. The promiscuity, though emotionally damaging, wasn’t physically dangerous as I only slept with Craig when he was in town and my “friend” and I knew both their histories and used protection. I didn’t snort cocaine off the glass table, I wasn’t shooting heroin. But for relatively cautious me, these risks felt huge, and I had the tantalizing spectre of my luck running out, the possibility always on my mind. I wanted it to run out. Because I was fucking miserable. And I needed a Deus ex Machina of an overdose or severe injury to derail me. I ended up derailing myself, but it was like a quiet, tipsy drive off a foggy road into a ditch rather than a plane crash.  Oh yeah, I drove home drunk from Toledo too, but that was a couple of months later, when I was working for Family Video in Sylvania. We used to go to a nearby dive bar afterward, where my newly tattooed young body was, it seemed, tantalizing to my middle-aged average male supervisors who enjoyed buying me jello shots. There, I was in transition, trying to re-build self esteem but letting myself be objectified, my tattoos not allowed to show at work, despite the “Adult” section behind a red curtain in the back. Family Video was the final frontier of my displacement and I’m glad I didn’t have to stay there too long with its 45 minute commute for $7.50 per devastatingly demoralizing hour. But the job was a necessary stop gap and again I was lucky that my remaining destructiveness didn’t cause permanent damage before my real life could begin that fall.

First, still at The Buckle as my birthday approached and a Back To School fashion show was being organized, I had to ask Jake to attend a party with me, have him say yes and then totally blow me off when the day came, after which I drove home in a thunderstorm sobbing and ended up in the cemetery, taking some pills and quitting The Buckle by phone from a hospital bed. I also arranged an interview at Family Video from the hospital.  Jake blowing me off was a last straw, the hiring of a new Assistant Manager another last straw, the memo we all received about a company issue called “Familyocity” where you cared about your co-workers too much to compete with them or fire them was the last last straw. Oh, and the fashion show that kind, handsome Brent put together that I was supposed to participate in with all the hot youth that I couldn’t actually bear to imagine. Me? Strutting down a catwalk in the middle of Franklin Park Mall? I was realizing NOPE fast. Brent was the only one to call the hospital to make sure I was okay. Brent, thank you. Jeff had already fled to work at Sufficient Grounds with Sarah, another favorite who was also someone I could have been friends with outside the Buckle world. I sincerely wish I had stayed in touch with both of them.

I actually visited two cemeteries that night after Jake blew me off. The first was where Craig’s first grade best friend was buried, though I couldn’t find his grave in the dark, even with the lightning’s occasional illumination. I moved on to the cemetery in town where I could find my own friend’s headstone with my eyes closed. She had died of leukemia five years before. I lay down on the wet grass, six feet above her forever 19 year old bones, wishing I had died instead, wanting to take her place, lightning streaking above through the swishing tree branches. The pouring rain obliterated my hysterical tears and I imagined disintegrating like the wicked witch, melting into the earth.  

When I remained stubbornly solid and conscious and waterlogged, desperation guided me to my parents’ house rather than my apartment which no longer felt like home, occupied as it was by my former best friend and her fiancé, a recent pairing which felt like a slap in the face. I only wanted to sleep for as long as possible, but did not take enough of the Fiorinal 3 capsules (a barbiturate/ codeine / caffeine compound to treat tension headaches) to even accomplish that. Six of the blue and yellow dolls only caused tremors and increased my misery and I was a bedraggled sopping fetal mess on the couch when Mom got up to get ready for her Sunday morning choir directing gig. 

In the emergency room, I talked to the psych person who was on call. I remember saying “My birthday is in a few days,” and I guess that along with the summary of my desperate disaster of a summer (entire year, really) convinced him that an inpatient stay might be called for, and I agreed, with what must have been relief. Take me out of my own hands, I imagine thinking.  No more choices. All of my decisions have been wrong. I imagine thinking on that Sunday morning, save my soul.

I maintain that my week-long stay in Toledo Hospital’s psychiatric unit was as interesting as any of the books or movies about the topic (thinking mainly of Girl, Interrupted and It’s Kind of a Funny Story). I kept a journal, and while I’d be hard pressed to find it right now, the writing and then the re-reading of it over the years caused it to be lodged much more permanently in my sieve of a memory than many events in my life.

Starting with being in the locked PIC ward (psychiatric intensive care) on suicide watch, everything being taken away from me, a small shatter proof double paned window. A bed. I was given Ativan and I slept. When I was transferred to the regular ward I had a room mate who named Nicole was a self-harming bipolar young woman, ugly black scabs on her skinny forearms. I remember her saying “You just gonna lie there all day? Come on, come to the common room with me.” And so I began to learn the mysterious, hyper-scheduled routine of the 8th floor, a hospital where you are not allowed to be in bed. A hospital with a smoking room, arts and crafts, exercise, group and individual therapy. 

The smoking room. At scheduled times we shuffled in, lit our cigarettes on special lighter things mounted on the wall, and chatted and gossiped. This is where real therapy took place, unsupervised. My dad brought me some Marlboro Light Menthols, my slow suicide of choice at that time. We lived for the smoking room. I learned that most of the other patients were bipolar and / or had attempted suicide. 

Highlights

    • In art therapy I painted a plaster dinosaur and a serenity prayer plaque. Our days started with a “morning stretch” before breakfast. I was always cold. For the first two days I had no migraine medication.

    • There was a large lady of color named Eugenia who was always concerned about the pieces of pie she hoarded in the shared fridge. She often accused “the teens” (in a separate ward) of sneaking in and taking them.  I never learned why she was there, but I loved her, and she became fond enough of me that before I left she gave me some of her clothes that she had gained too much weight to wear.

     • Group therapy was totally  ineffective. We often had counselors who were far younger than most of us, and worse, seemed to know less than we did. The condescension was hard to take. During one session, without deciding it beforehand, we all asked complicated questions in order to fluster the young man leading the session. Then, a short and funny patient named Deb jumped up and wrote two letters on the dry erase board with lines under them: P (patients) and S (staff). With a flourish, after the counselor had gotten particularly frustrated, she placed one hashmark under the P. She was keeping score! I remember it going on for far longer than you might expect. Then of course we were all sent to our rooms and threatened with some sort of punishment but we were SO proud of ourselves. That was the first time I thought This is like a movie and I’m living it. 

     • In another group session a patient fell off her chair and had a seizure. After it was clear the counselor wasn’t going to act, Deb got up and assisted the person while the counselor finally picked up the phone in a panic and dialed for help. I had begun to rely on Deb’s confident presence, which is why it was sad for me when one day she was missing. “She freaked out last night,” someone confided. “She has to get shock treatment today.” I didn’t see Deb again.

     • The day of my birthday, I received a lot of phone calls. These were announced over a paging system, and then you would go out to the phone “booth” in the common room. One call caused me to be late for a smoke break. After the attendant escorting me unlocked the door, I rushed in with my Marlboro between my fingers. I felt all eyes on me, some curious, some resentful. “YOU sure are getting a lot of calls.” Someone said. “Well…” I hadn’t wanted to make a big deal of it. I lit my cigarette from the wall and said, “It’s my birthday.” There was a beat of silence and then the room erupted. “WHAT?!”  “Happy Birthday!”  “No way!” “Why didn’t you tell us?” The next think I knew, someone had started the birthday song and everyone was singing. And their voices were surprisingly melodic. You haven’t lived until you’ve had Happy Birthday sung to you by twelve smoking nutcases. It is one of my favorite memories, not just of that week, but my entire life.

My psychiatrist decided to change my medication from Effexor to Zoloft. He listened patiently to everything I had been going through. When I mentioned something about my endometriosis (for which I’d had two surgeries and was taking a medication to put me into a false menopause), he inquired about my fertility. I told him I didn’t expect to be able to have children, that my first gynecologist had encouraged me to put off or skip college in order to have a baby as soon as possible. The psychiatrist was horrified. I felt so validated by that. He mentioned a therapist he wanted me to see, a psychologist who was also an RN named Virginia. I continued seeing her for years. She is the best therapist I have ever had and Dr. Mac (current psychologist) reminds me of her.

The mix I made right after getting out of the hospital is a nearly laughably typical late nineties depression mix with Nirvana, Soundgarden, Fiona Apple, Natalie Merchant, Depeche Mode, and the Cranberries. It took a number of months to put my shattered self back together. I found a tiny apartment in which I could live by myself with a huge skylight instead of windows; it was above a print shop which made it smell like ink. The smell didn’t bother me; in fact I loved it. Even today when I walk downtown past Wizard Graphics and the ink scent hits me, it fills me with calm. I also applied for a job at Grounds For Thought at my mother’s insistence, a coffee shop / used bookstore a block away from my new apartment, even though I didn’t feel cool enough to set foot in it, much less work there. But I was hired. The Buckle (a symbol for the more important events of graduating from college, being dumped and losing Craig) had broken me, and as the pieces started to fit back together, I became the me I would be for the rest of my life. I was poised on the edge of meeting John and all the people who would matter in the years to come. When I was promoted to full time Night Manager at Grounds in October of ’97  I was able to finally quit Family Video, where they were quietly disapproving and suspicious of my “moonlighting” at a coffee shop. I worked at Grounds for almost a decade, through meeting and dating John, getting married, getting pregnant and having X, and going chronic.

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My “Buckle Songs” mix contains mostly the happy, dancy music that made us squeal and start dancing in place no matter what we were doing when the songs came on. Some of the songs reflect my frenetic despair. There are a few songs from Baz Luhrman’s Romeo + Juliet, which was important to me at the time. It started with Urge Overkill’s “Girl, You’ll Be a Woman Soon” from Pulp Fiction and ended with “Make It Home” by Julianna Hatfield, which had been in the Christmas My So-Called Life episode when Rickie was homeless. As I found more songs from our actual Buckle playlists I replaced throw-away songs with more authentic ones, so it was edited a few times over the next year, much like my actual evolving life. I got more tattoos. I grew up.

 

**Update: While listening to the Buckle mix while driving everyone to school (at three different times), a memory suddenly came back to me of another co-worker I’d totally forgotten about, a beautiful young woman of color who vividly called out the Presidents of the U.S.A. regarding the real meaning of their song “Peaches” and claimed joyfully that she was going to wear a t-shirt saying “KILL WHITEY” to get out of her impending jury duty.  I realized that the Buckle staff were much more diverse than I initially remembered, though undeniably everyone was very attractive. My friend Sarah, whom I’m recalling a little more clearly now, was a short, adorable ginger with a nose ring; not waify and blonde or heroin chic. This was the most unique group of people I ever worked with, which I sought to re-create when I began hiring at Grounds. And I still say I had the best Grounds Crew there ever was and ever will be again. 

***Update #2: The Buckle mix also seems to be telling me to hold on and be patient; that my real life, and even John, were right around the corner.

****Update #3: For one week near the end of summer, the girls attend Hogwarts camp. Last year while walking them through Diagon Alley, I heard a voice exclaim “Elizabeth?? Oh my gosh!!” She was in costume as a professor and head of house, and to be honest I still don’t really remember her, but she had been a co-worker of mine at The Buckle, 19 years before. “How ARE you? I married Todd, you know, the other keyholder? Our two kids are here. Are these yours?” Todd was the one who coined “Meat Market of the Mall.” I couldn’t believe this woman remembered me so clearly when I felt like such a lame imposter while working there. Their older son ended up being placed in X and Zo’s house. He and X got along SO WELL. They are both funny and random, and cute, and I loved watching them together last year and this year, 11 and 12 years old with no idea of their parents’ inauspicious joint past. Their friendship feels like the best kind of closure, the children being gemstones with their genesis in the summer of my rock bottom.

ER, Again

Asia is barking and anxiety yawning and upset. I am in my “Migraine Awareness” hoodie, pajama pants and heading to the ER myself once again. Waiting for my dad to take me there at around 6:15 pm. John thinks he’s getting out tomorrow, I think that’s too soon. They’re not even giving him any meds. I know I can’t take care of him in this state. So I didn’t lose my doctor, but I wasn’t able to get what I needed from him today either. So things are better, but they still suck? And I’m waiting. Like always, ER visits are like a box of chocolates… if chocolate weren’t such a terrible trigger for me. Or maybe, even more so because of that.

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what i need

At Home:
Water
Gluten-free foods
Fragrance-free soaps
Bio-Freeze
Heating pad
Cold packs
Pressure band
“Migrelief” herbal/ vitamin tabs
(feverfew/magnesium/vitB2)
Excedrin
Benadryl
Sudafed
Caffeine tabs
Ibuprofen
Ultracet
Xanax
Imitrex
Zanaflex
Percocet
DHE (Dihydroergotamine) 1 mg
ampules
25G Syringes
Dark
Quiet

In The ER:
IV fluids
Dilaudid – preferably 2 mg
Zofran or Phenergan
Benadryl
Decadron
Any other painkiller, including morphine, will not work.
Being treated respectfully is a plus.
Not having to wait for 2 hours to be seen, while banging head on wall and/or vomiting, is also a plus.
Not being in the room next to the crying baby is a plus.
Getting one of the rooms with a door not a curtain is a plus.
Getting Dr. Baker or Dr. Hess is the best case scenario. Unsurprisingly, they are both women.

In The Hospital:
IV fluids
Dilaudid immediately for acute, intense pain
Zofran or Phenergan for vomiting
Benadryl to prevent reaction to Phenergan
Once 24 hours has passed since last dose of Imitrex (because interaction can be fatal): DHE (Dihydroergotamine), preferably IV. DHE makes pain / nausea worse initially, but after 2-3 doses disintegrates headache at root. Dilaudid works from the top, covering and temporarily easing rather than eliminating. Both are essential. Both are hard to get because one is the strongest narcotic available and the other is an unusual, rarely-used old fashioned ergotamine derivative. Nurses have usually never heard of it and I can hear their thoughts, based on facial expressions: “The doctor gave in and let you have dilaudid, and that wasn’t enough? Now you also need this – D A G or whatever it is? We’ll see about that. Hmph!”
Being treated respectfully is always a plus. Nice, accommodating nurses, a hospitalist who knows what she’s doing…
WC Hospital’s long-time neurologist Dr. Mammoud learning better English would be a plus.
Once I’ve stopped vomiting, gluten-free hospital food tastes better than it has a right to.
Simba and picture of John & girls (comfort objects).
Cell phone, to communicate with outside world.
Comfy pajama pants & socks.

“Migraine Disease,” as it’s beginning to be called, is an invisible illness, to the point where nothing even shows up on MRIs, EEGs, or CAT scans. Invisible inside and out. But by the time I end up in the hospital it is very evident how terribly sick I am. Why, even then, is it so hard to get respect from medical professionals?

What I HAVE is unending, tireless support from my family and friends. A job from which I can’t get fired, with plenty of sick days and vacation time. I don’t take those things for granted. But not hiaving a doctor to care for my headaches right now is unnerving and scary. Dr. T doesn’t have any openings until August. Until then, I just have to keep my fingers crossed.