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

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.  🙏🏼

Blinded by the light


Feeling very bad right now. I expected a letdown, but I didn’t expect to be suffering the consequences of making a stupid mistake… can’t even sleep. Head hurts. Twin Peaks kind of sucked tonight despite the reappearance of the Log Lady.

I am almost 44 fucking years old. I estimate 45% of that time has been spent dealing with migraine symptoms whether it be pain or depression. 

I want to sleep.

Withdrawing: on a video by Lisa Benson

Inspired by my friend Lisa’s video for Migraine.com, I wrote this post on Facebook. Now I am sharing it here as well because I think it’s super important. Lisa identified something that has been bothering me a lot lately, and partially prompted my last blog entry.

 

It’s been a good week. The last day or two, I have been vivacious and social and affectionate with my friends. I have been able to be what I think of as *my best self.*

But just one month ago, being in public with those very same friends (my theatre family) was agony. I’d had a week-long attack and subsequent depression and when I was able to push through, I didn’t meet anyone’s eyes. Or laugh, or talk, and when I did talk I stammered and mumbled. I came late and left early. I constantly wiped away tears either due to panic and sadness, or migraine symptoms. I was emotionally over-sensitive. I winced and flinched from the fluorescent lighting and noise.

In public during a flare or attack, I wear mentholated patches on my head and TheraSpecs on my face. I dose up on medication, increasing migraine’s cognitive difficulties. I hide. At home I’m under the covers in the dark. In public, I will hide behind my hair, or in shadowy corners, or in my car, or in the restroom. I pull into myself, hunching my shoulders. I pile concealer on dark circles and the cystic acne from immunodeficiency and meds. I am a wounded deer in headlights.

The other aspect of a long attack for me, and something not touched on in the video below, is my social media activity. I am a patient advocate for migraine disease. While confined to bed, I share my (admittedly depressing at best, disturbing at worst) feelings about the process. I share my symptoms and how they are affecting my family. I share exactly how I’m feeling emotionally. That can be understandably uncomfortable for people, to read that (as during Cinderella’s tech week) I feel almost like I don’t want to live anymore if I can’t be doing what I love most. Publicly discussing severe pain and illness, depression, and suicidality is taboo. But talking about it is what I do. It is, quite literally, my job.

It is also Lisa Benson‘s job. In this video, she explains why during an attack we can seem withdrawn and changed. It would mean so much to me if people could watch my friend speak for us, describing why we stammer, why we hide. Especially my supporters and much-loved friends at HYT and Julie’s Dance Studio. I may tag you in comments. That doesn’t mean I feel you don’t care. It means I know you do.

Thank you for giving me a voice, Lisa. You’re amazing. 💜 We all are.

12,531 Views

This is a video you can share with close family and friends to explain why we may appear withdrawn or not ourselves when we are dealing with migraine. https://migraine.com/?p=89255

“What’s this pumpkin doing here?”

I missed a lot of Cinderella’s final rehearsals. Being backstage with the kids helping with hair and makeup, assisting with crew and costumes, and just *being there* ~ pretty much my favorite thing ever. But I’ve been really sick with a long migraine attack / flare for almost two weeks, making me feel unreliable and flaky, and even worse, like I’m being overly dramatic and self-centered.

Migraine disease doesn’t give me a choice. It seems to flare most during times of increased activity or stress. The more medication I take to try to keep going, the less well it works. Guilt and sadness on top of fatigue on top of pain. When I can’t be there during important times people stop relying on me, stop expecting me. Stop bothering to figure out how I’m doing because it’s always the same. Migraine again. “Wasn’t she doing that study?” “Won’t she ever get better?” “Why does she sign up for things in the first place?” 

Why did I have kids? Why even try?

Why live at all?

Update:

A pumpkin is still just a pumpkin. I was able to go tonight, but having missed almost all of Tech week, I didn’t have any jobs other than to be there for my kids.

Who didn’t want me.  Why should they?

X is 12 now. She thinks she may be asexual, and I love that she has a smorgasbord of labels from which to figure out how she fits into the world of relationships. Especially among theatre and arts kids, there are fewer strictly straight kids than otherwise.  But she is spending a lot of time with a couple boys this show, both of whom I like. Her current two  closest show friends are one boy and one girl both a year or so older than she. X used to need me at shows and all the older kids accepted me being there, and still accepted her. I would find ways to be needed besides just as support for my insecure kid.

Now she doesn’t need me and that’s fine and right and as it should be. Except that she totally freaked out over the makeup artists asking her to pull her bangs back. “I won’t be recognizable on stage,” she whined. “I won’t look like me.” I said, you aren’t supposed to look like you. You’re supposed to be Fairy #1. It ended up being okay. After the makeup was applied I pulled some wisps down over her forehead. Her male buddy distracted her by pointing out how the school’s signs were in all upper case. “Everyone is yelling all the time.” Her female buddy told her she looked beautiful. She did.

This female buddy, Fairy #2, drove X crazy at first. Doesn’t it always begin like that? The other night she threw her arms around me and exclaimed “I love you, Stage Mom!”

So why did X start acting the way she did? But she’s 12. She’s seeking independence. I’m okay with it.

Zo, I am not so okay with. She is playing a mouse puppeteer / horse and villager. She has plenty of kids her age there to hang out with. There have been some conflicts because all four mice are leader-types. She’s 8. X was never in a production that young. Zo is used to the stage, having been in three Nutcracker ballets and four big recitals for dance. And I am always there for those, I have to be. As for Cinderella, at home, she acts like she wants me at rehearsals / performances, but when we’re actually there she is rude and looks at me like she is disgusted. I don’t know if you’ve seen the photos, but I am not gross or embarrassing. Particularly among theatre kids I am even considered cool, heavily tattooed and pierced as I am. And I don’t really hover, I don’t treat Zo like a baby. So ripping away from me and shrugging me off when I’m trying to help her? I don’t get it. Competing with her sister, John thinks, or wanting to feel older. I don’t know.

But I managed to get there tonight after being in the ER yesterday and it was very hot in the green room. And I dealt with X’s tantrum about her bangs, helped her deal with a broken prop, found the Fairy Godmother’s missing staff, located Zo’s mouse puppet which she was told to find. And yet felt completely, sadly superfluous.

I asked both of them if they needed anything and was answered with shrugs.  So I left.

“Put it in the pantry,” the Queen instructs Lionel regarding the pumpkin that has suddenly appeared outside the palace. “We don’t want anyone falling over it.”

No one sings like you anymore

Trigger Warning: meandering discussion of suicide and substance abuse

http://www.rollingstone.com/music/news/chris-cornell-autopsy-and-toxicology-report-released-w484309

This RS article rocked me to my core, kept me up writing and thinking two nights in a row.

Depression, trauma, substances. Stigma, shame, and suicide.

First, the substances. Ativan is usually prescribed in 1 mg tablets. No matter how it is administered, 4 mg is the max recommended dose. The nanograms per milliliter of blood measurement used here is extremely difficult to translate, even using an online conversion tool, so I have no idea how much he actually had ingested, but I am guessing 5-6 mg since they are saying more than the usual dose but not one normally  associated with fatality. That makes sense according to his wife’s statement that he took “a couple extra.”

Info about Ativan (lorazepam): https://www.drugs.com/amp/ativan.html

Butalbital as far as I know is not available by itself but is commonly prescribed in a compound formula for “tension” headaches which most specialists now understand are part of migraine disease. The brand name of the butalbital/ caffeine/ acetaminophen compound is Fioricet. I have used this med on and off my whole life, formerly concurrent with Xanax or Ativan. It also is available with codeine, which is what I had been prescribed (I now have Fioricet without codeine and no longer take anti-anxiety meds). The article does not mention acetaminophen, but does mention caffeine, which they claim was from No-Doz. 

Info about Butalbital, a barbiturate: https://en.m.wikipedia.org/wiki/Butalbital

Did Chris suffer from migraines? Or as a rock star in recovery, was he able to get this combination of meds specially prescribed for anxiety and / or insomnia? Many former drug users in recovery are prescribed Ativan. (But why take caffeine separately, particularly with sedatives? Was it a “cocktail” he’d discovered that produced a non-narcotic, non-alcoholic high?) The naloxone is interesting too. It’s an antagonist, but in combination with these other drugs it could (maybe?) act similarly to a narcotic in increasing the effects of the depressants. Naloxone only stops the action of opiates. [Editing again to add that I read one article stating Naloxone (Narcan) may have been injected by emergency responders after he was found.]

Also in his system when he died was pseudoephedrine, brand name Sudafed. It is taken for sinus pain / headache which also can be part of migraine disease. Like caffeine, it is a stimulant. The combination of sedatives, barbiturates, and stimulants is particularly dangerous.

In my 20s and 30s there were many instances when I took the above meds together as prescribed for migraine, with an opiate as well, and then combined them with a lot of alcohol during nights of social binge-drinking. I also had occasional extreme mood swings which, I realized with prompting from John, after I was no longer taking it, were brought on by the Fioricet 3 (w/ codeine) in particular, exacerbated by the anti-anxiety meds. These sudden bursts of intense emotion included both violent rages and severe depression. [Editing to make clear that the violence was against inanimate objects, not people or myself.]

As well as feeling incredibly sad about the circumstances surrounding Chris’s suicide, I am sort of feeling damn lucky to be alive. I think I am made of stronger stuff than I realized. 

I keep adding to and revising this post. And I am so fucking sad, getting more and more so. Chris Cornell was a grunge success story, a man who grieved for and celebrated the tragic deaths of friends and fellow musicians, most famously in Temple Of The Dog, and who seemed to triumph over trauma to choose life, to choose music and family and love and philanthropy and friendship over giving in to despair. John told me the song “Slaves & Bulldozers” basically saved him as an adolescent recovering from abuse. He sent me the lyrics in a text the day Chris died, and they read as though Chris himself may have been molested or raped. As fans know, he ended with that song in Detroit hours before his death, blending it with “In My Time of Dying” by Led Zeppelin. If my wings should fail me Lord, please meet me with another pair.  /  I hope I did somebody some good. / So I can die easy…..  The song is filled with Catholic imagery. Like John, Chris went to Catholic school. Like John, he seemed to worry about his soul. Like John, his parents got divorced, and considering Chris chose to use his mother’s maiden name in the aftermath, it may have been messy and horrible. 

I just read an article about how the stories surrounding this death relate to the stigma involved with suicide as well as medications. When someone dies from opening up the veins in their arms, the razor blade isn’t blamed, the author said. I see her point, but also see the flaws in that argument since weapons don’t alter one’s thoughts the way many drugs can. I maintain my agreement with Vicky and my own statements throughout this post regarding the devastating mood effects the combination of butalbital, caffeine, and Ativan can have. HOWEVER. Depression leads to suicide. Ativan and Butalbital did not kill Chris Cornell. Depression did. The meds may have altered that triumphant will to live despite the darkness just enough for him to give in to the rain that couldn’t, finally, be washed away. Depression needs to be discussed without shame and blame. Depression kills. 

As for me, please know that I am MUCH more careful with medications now. There is no reason to worry about Current Me. But Past Me? Damn girl, that was some stupid, careless shit. Careless because of my occasional choice to start drinking before all the chemicals were out of my system; but yet, I was taking legitimately prescribed meds for the symptoms of my illness. And I could have died. Why didn’t I? Other than occasionally wanting to go to sleep and never wake up I have never truly felt suicidal (exceptions would be when I took Topamax and other anti-epileptics, but even then it was sleep forever type suicidal). I have never had to engage in that fight to overcome constant thoughts of ending my life.

I am more relieved than I can say that my family was spared the agony Vicky and her kids are enduring right now, because I think she was right. Without that strange but familiar-to-me cocktail of meds, maybe Chris would not have taken his life after surviving so much for so long; after publicly grieving the early deaths of his friends and contemporaries; after marrying again and producing children who are still young (he also has as an older daughter). There but for the grace of John, X, & Zo go I, as paraphrased from Winston Churchill, Sherlock Holmes, and Simon & Garfunkel. Or maybe, I simply was never at that kind of risk because my own depression never convinced me my family would be better off without me. Suicide is not selfish. For those who suffer that severely it can feel like the only option. Suicidal ideation, especially exacerbated by mind-altering drugs, tricks you into believing your loved ones will be better off without you to bring them down and perhaps ruin their lives as your own feels ruined beyond redemption and repair. 


Chris Cornell, you beautiful, troubled man, thank you for creating art that soothed my traumatized partner in his youth. Thank you for your words and your voice, which sustained much of Generation X when we were falling on our own black days. What trauma did you suffer in your own childhood that created the anxiety and depression you sang about and spoke of in interviews? What supreme sadness bubbled to the surface that made death seem like the only way out?

This post has morphed many times. It no longer flows as well as I’d like. But there is nothing easy about discussing depression, trauma, grief, and suicide. PLEASE, readers of my blog, sufferers of chronic pain and depression and PTSD, substance-users, whether illicit or prescribed or both, trauma survivors, suicidal-thought fighters, you are not alone. You are worthy. Whether I know you or not I am glad to share this planet with you. Get through the next hour, the next day, one moment at a time. Get help. 

I am so glad I got to see Chris perform in his grunge heyday. I am so glad that despite frequently imbibing nearly the identical combination of meds found in his toxicology report, I am still here to rock out to and revel in his tortured genius, his swan songs; that, as Eddie Vedder triumphantly bellowed through the pouring rain at that same Lollapalooza in 1992, I’m still alive. 

I just wish Chris Cornell were still alive too. Oh but do I deserve to be / Is that the question? / And if so, if so / Who answers? 

Who answers?



In The Eye of a Hurricane

I dropped my dance mom basket this week.

The members of the youth theatre board on which I serve discuss wearing different “hats.” Because we are stage parents as well as administrative board members, we have to be careful to distinguish what role we are playing. If I am talking to another parent / board member and lamenting about something affecting one of my daughters I would be quick to clarify “mom hat” so that the person would know I’m not looking at it from a leadership perspective.

However, I have recently started thinking of my different roles in life as baskets I’m carrying instead of hats I’m wearing. The baskets have things in them. They are difficult to balance. I can carry more than one at a time, but the more items in the baskets, the harder it is to figure out how to manage.

I have a partner basket and a house basket. A home parenting basket. An Indy News basket for one job; and a migraine.com basket for the other, which has strings tying it to this blog and other advocacy work, and my illness. The migraine patient basket is a big one. A theatre parent / stage crew basket, tied to my advisory board basket.

John and I are working hard on our relationship, budgeting, the future, becoming independent financially, and our house. We started couples counseling, which is long overdue. But I think because I’ve been focusing more on my partner and house baskets, my others have gotten neglected. I admit to being a little overwhelmed, particularly this week because both girls are dancing in a big recital on Saturday, and we have long daily rehearsals for Cinderella, our summer musical. I have caught up with my jobs, but not the advisory board. I have been very attentive to the girls at home, and focusing on the musical, which is Zo’s first, and have totally neglected Star Style, the big recital. The dance mom basket was full to overflowing and it slipped from my fingers without me even realizing it.

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This is going to be X’s only year participating in Star Style, as she decided to take a dance class to sharpen her skills for musicals. And I forgot to order both girls a t-shirt, the only one that will have both their names on it. It’s too late. There MIGHT be extras in a few weeks but no one knows. X was so disappointed. I’m having a hard time getting over how upset I feel about it.

Another fail was also involving X, who dances very early in the first show. Because of some confusion she totally missed the start of her dance at the studio rehearsal last night, and when I encouraged her to just run on in and join she panicked and began to cry, and I was hard on her. She just turned 12, and I thought she was acting infantile, but later when we talked, she told me she definitely has a “thing” about being late and entering a room or a rehearsal after everyone else has begun. I think instead of being childish, what she was doing was having a legitimate panic attack, and I of all people should have recognized that and comforted her rather than being bitchy. I apologized quickly and profusely and we’re okay now, but again, that was a huge fail on my part.

Tonight we have a break from dance and I actually am not going to attend play practice either. Instead, I am going to get to go see Ron Chernow, the author of Alexander Hamilton, the biography which inspired Lin-Manuel Miranda to create Hamilton: An American Musical. My friend is driving so I don’t even have that stress to worry about, and we are both bringing our books to have him sign and are going to totally geek out. I can’t wait.

I hope that hearing Chernow speak will motivate me to get through the rest of this week. And I know that getting some time without any baskets at all, just being ME, will be rejuvenating, and maybe will help me improve my balancing act.

Sometimes, we all need moments of having nothing to carry at all.

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[Update: extra recital shirts were available much sooner than expected, but the price had been increased so I bought one for the girls to share. My dance mom BFF surprised us by purchasing another for us because “they should each have one.” She even bought the right size. Star Style went great. I made it through the week. I get by with a little help from my friends.]