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. đź’ś 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.

I am now a Patient Advocate and Contributor on Migraine.com

Sometimes, everything lines up in exactly the right way.

My favorite headache blogger, Kerrie Smyres of The Daily Headache, had posted an article about several available CGRP studies and the pros and cons of getting involved. Since one of the studies was Amgen, I commented that I hadn’t had a hugely noticeable improvement on that drug, but that I would soon begin a new study. I didn’t think anything of it as Kerrie doesn’t always interact with readers, though she had been very helpful to me a couple years ago when I was considering trying Ritalin as a preventative, which she had also attempted. 

So I was pleasantly shocked and super excited to receive an email from Kerrie thanking me for giving a shout-out to her company TheraSpecs in an advocacy post on Facebook. She then asked if she could interview me for either her personal blog or Migraine.com about my experiences in the CGRP studies. 

The CGRP drugs in development right now are going to completely revitalize migraine treatment. They will be the first drugs to be created for the prevention of migraine – think of that. 36 million people in the US suffer from migraine and ALL the drugs used to prevent them are for other things. Used off-label for migraine, most cause significant side effects and are very hit or mis in their effectiveness. So there are millions of people waiting with bated breath for the new drugs to be approved, drugs which target migraine specifically and have no detrimental side effects. Needless to say I was ecstatic to speak frankly about my experience on two of the new drugs, and opted to have it published on Migraine.com  for the largest audience.

Kerrie sent me an email of very specific questions. My migraine brain had a hard time recalling all of the details, so I dug up my consent forms and checked my blog for dates and information. I answered the questions as thoroughly as possible, Kerrie asked for clarification on some things, and said she would submit the article to be published when Migraine.com was ready.

It was published, which I blogged about previously, and I interacted with some readers on Facebook. Because of this article, and probably this blog, it was decided that I would be a unique and valuable voice as an actual Migraine.com Patient Advocate and writer, and I was asked to join the team.

It is hard to describe to someone outside the chronic illness world how exciting that was. It would be sort of like if a musician who plays local bars in his hometown was suddenly asked to tour nationally with famous bands he always admired. I’ve been blogging for five years to around 300 people. Now some of my writing on migraine will be seen by at least 60,000. And those are just the people who subscribe to the newsletter.

I will still be blogging here about more personal topics and will post my migraine.com articles after they are published. I have two posts ready to go, whenever Migraine.com is ready. I am completely thrilled to be joining this illustrious list of advocates including Katie Golden, Tammy Rome, Diana Lee, Nancy Harris Bonk, Anna Eidt, Janet Geddis, and Jennette Fulda, whose book Chocolate & Vicodin I have been wanting to buy for some time. All of the contributors have so much to offer and I am excited to get to know them better and become more familiar with the names I didn’t know previously.

I am @headcase73 on Twitter.

Life has been hard for several years, but J and I have been working hard to make things better. And I think we’re succeeding. 

Yay!

My CGRP interview on Migraine.com

I always feel guilty when I return to the blog after a long absence, which seems silly. Like I need to explain myself. Life ebbs and flows  and I often find myself unable to do everything I’d like to be doing. I just can’t fit it all in, which I think is a pretty universal experience, especially adding in school-age children and chronic illness.

I don’t think I ever let everyone know that J got the job he so desperately needed to get at the local state university. So many of my entries over the last 2-3 years have focused on our poverty, and I hope we will be finally digging our way out of that hole. Our normal, non-government insurance coverage will begin in a few weeks and I can finally find a new doctor and file a complaint about Dr S.

I just started a second CGRP study, and Kerrie Smyres who blogs at The Daily Headache interviewed me recently for an article on migraine.com. It was published yesterday, please read it!

X is preparing for a theatre competition this weekend and starting middle school in a few weeks; Zo was awarded the roles she wanted in this year’s Nutcracker. I have been occasionally serving at my friend’s nanobrewery and contributing to a new online news source in my hometown, which I’m very proud of. In all, things are… dare I say it? Good.