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.  🙏🏼

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.”

Professional Empowerment in the Realm of Disability and Invisible Illness

I had a weird feeling about it from the very beginning.

Of course there was the initial excitement of being emailed by a national television producer, but that quickly gave way to anxiety that at some level hasn’t let up since March 1.

Since becoming a writer and advocate for migraine.com, my personal blogging at home has become professional. I am technically freelance, though Health Union calls us all a team, and we all feel happily “employed” by that company. But I don’t have a boss, or anyone looking out for my best interests, to make sure I’m being properly treated, compensated, and served in any other capacity I advocate for migraine. I can only continue advocating for myself, for my own time and energy, the same way I do for my illness.

I attended the #huconnexion17 conference; was asked to attend the Amgen Bloggers Summit in LA; and filled out a form for a possible financially compensated video appearance for a so far unknown migraine awareness production. All of these were efficient, official, and I was either reimbursed or otherwise compensated.

Not so with this supposed WebMD / Robin Roberts Productions “Migraine Awareness” video series. Even though it was potentially huge, and John bragged about it to everyone he knew, I kept quiet. I was starting to be able to distinguish professional opportunities that were worth my time from those that probably wouldn’t be. Or wouldn’t happen at all.

Here is the email I sent them this morning withdrawing from the project. After all, there is no one to look out for me… except me.

Hello,

After getting up and assessing how I feel I am starting to have some concerns. I appreciate you reading this email rather than my having to try to explain this on the phone.

I was initially excited about this project due to the idea of promoting awareness for migraine disease. However, since first being contacted by Lynn Draisin on March 1, and then speaking with her on the phone a few days later and agreeing to be filmed, I have been told I was to be filmed here in mid-March with details to come. Then the plan was that I was to be flown to NYC at the end of March, so I began to make plans in that direction, but when I didn’t hear anything I had to reach out to both Lynn and Taryn to hear that this was no longer going to be the case due to scheduling but I would once again have to accommodate people here in my hometown. I was told by my migraine.com colleague Kerrie Smyres that Lynn was actually leaving her job with the production company. I sent Taryn many, many requested photos and then sort of got “passed off” again to someone else. While I totally understand that this is probably how these types of projects normally work, it’s not something that has been making me feel comfortable.

People with longterm chronic illness develop an almost permanent state of anxiety and PTSD due to things in our lives constantly being beyond our control. From the migraine disease itself to problems with disability and insurance and doctors and hospitals to no longer being able to work outside the home there is very little that is stable about my situation. To have yet another unstable and uncontrollable situation looming over me, because that’s how it feels, has begun to produce more anxiety and negative effects on me than the benefits that may be felt by me personally or the migraine community from my involvement. 

Health Union, the company behind migraine.com, and the Amgen Bloggers Summit, and the few other inquiries I’ve had about promoting migraine awareness through my writing or physical representation have all provided immediate official paperwork, statements of intent, project prospectuses, and promises of compensation. I’m realizing that in this situation, especially with the request of my young daughters to be involved, I have seen nothing official except assurances that you all work with Robin Roberts and that the series is going to be on WebMD. Not being able to control things like weather, my husband’s teaching schedule, my own secondary migraine symptoms (the severe pain has truly been lessened due to the CGRP trial medication but I deal with the other migraine symptoms of nausea, depression, occasional cognitive dysfunction, allodynia, vertigo etc on a daily basis), my daughters’ school and activity schedules AND the fact that I am not even going to be able to control the narrative your company presents about my personal situation, I have reconsidered appearing in the project.

Of course, I understand we needed to speak by telephone and that many of the issues of official paperwork, dates, times and plans may have been discussed then, but it’s not enough. My time is valuable, and I am not getting the impression from your company that it is seen as such. I hope that your project is able to move forward and that it does increase awareness of migraine disease, but it is going to have to do so without my involvement. 

I’m sorry to only drop this on you this morning, but I haven’t been well and only was able to figure this all out just now. Since plans have been continuously evolving on your end also, I hope you can understand my position.

I am cc-ing my husband on this email so please make sure to include him on any replies.

Respectfully,

elizabeth roberts-zibbel

ladymigraine.com

migraine365.com

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Thoughts on the inauguration of the NOTUS

Today I read a powerful blog post someone wrote called “Let the record show.” I linked to it; you should really go read it. I am not feeling very eloquent right now, and there’s no way I could communicate these thoughts any better than this author already did.

The NOTUS, Narcissist Of The United States, is not my president. I didn’t vote for him, I hate everything he stands for, I am horrified that Republicans are trying to wipe away the Affordable Care Act, which will likely lead to people DYING. (Pro”LIFE,” huh?) Newly involved in the business of journalism, I am paying attention to how he is treating reporters. I just read today that he is going to eliminate the National Endowment for the Arts.


I feel like our democracy has been yanked away from us. DJT lost the popular vote by almost 3 million. I am reading Chernow’s biography of Alexander Hamilton and feel indignant that he anticipated this exact scenario, hence the creation of the electoral college, but the Electors refused to use it the way it was intended. Now we know that Russia was responsible for the DNC hacking and Wikileaks release and STILL Hillary won the popular vote. The election is invalid. There is treason in the air.

Up until a few months ago I was on  Ohio’s expanded Medicaid. If John hadn’t gotten his university job…

I’m not feeling super great, and just rambling, really. I love President Obama, and going from him and his lovely family and the Bidens, who called The White House “The People’s House” and opened it up to poetry slams, concerts, and other cultural events, to Trump, who tweeted a ridiculous photo of himself “writing his inauguration speech” at Mar-a-Lago, calling it “The Winter White House” fills me with horror and disgust.

HERE IS THE WINTER WHITE HOUSE

Obama and his daughters play in the snow. Photo by Pete Souza.

DJT disparaged Muslims. He has a proven history of assaulting women. He strikes back at anyone who criticizes him. He can barely string two sentences together. He definitely has an unsavory connection with Putin.

I wish I could go to the Women’s March in DC, or the sister march in Ann Arbor, but I am proud to be participating and helping with the Disability March, which is now an official partner. If you have a chronic illness or visible or invisible disability and would like to participate, go to www.disabilitymarch.com.

Trump protest posters by Shepherd Fairey

Here is a portion of Obama’s goodbye email to the American people.


We shall overcome…

I definitely need to be taught how to say good bye.

The home of a Muslim family in a nearby city was vandalized with a swastika. After the outpouring of love they received, one of the family members painted over it. Their garage door was eventually replaced free of charge and the Toledo Symphony Orchestra played outside during a peaceful gathering.

DJT canceled a trip to the African American Museum on MLK Day after attacking Rep John Lewis for not attending the inauguration

I will never call him President. He will be DJT, or NOTUS, or He Who Must Not Be Named. And we are Dumbledore’s Army.

We now know they were listening to Obama’s speech the day after DJT’s “victory,” but still.


RISE UP.

When and if the time comes, I will do whatever is necessary to keep my family and friends safe. I also pledge to step up and intercede on behalf of anyone who needs help. I will attend and participate. I will teach my children tolerance and kindness. I will continue to live and work and write and play.

As scary as everything is right now (and make no mistake, I AM scared) I keep thinking of something Obama said at his last press conference: “The only thing that’s the end of the world… is the end of the world.”

We shall overcome.