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.

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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