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

IMG_7844

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.

Chapter 1967: My Man Wrote a Short Story



Chapter 1967

By The Mechanical Cat

Norma Jeane leaned back in the wooden chair and gently let her hand drift down her leg to feel the comfort of the snub-nosed .38, snugly holstered against her earthly thigh. A wisp of smoke left her mouth and danced toward the ceiling of the cabin. “Well, since every fucking agency and commission on the planet knows what’s going on in this cabin, what’s the plan now kitty-boy?” Norma’s voice was raspy.

“We’ve got an entire social revolution underway,” I said. “It’s a good diversion for now.”

“Obviously not fucking good enough. Do you even know who is outside?” Norma asked.

Across the room the glowing red eyes of the Mothman could be felt like the aurora borealis. He stood and walked toward the table where I was sitting with Norma. A murky hypnosis spread around us as the  Mothman tried to communicate.

“This is shit,” said Norma. “No fucking way. I am not doing it.” Bigfoot looked at the platinum blond wig and rhinestone dress lying in a heap on the table and raised a hairy eyebrow. Click. Flame. Cigarette. Norma inhaled and out blew a cloud of smoke. “Right now there are twelve agents out there. Watching our every move. Listening to every cigarette I light. Every word we speak.”

“Listen Norma-”

“No, you listen, Cat. Marilyn Monroe is dead. DEAD.” And she raised her eyebrows, expecting a response. She tilted her glass of whiskey back to her mouth and finished what was left. “I’m going out there.”

“Norma, it’s too dangerous” said Bigfoot through a face of fur.

“Nice,” said Norma. “Fuckin awesome. I thought you were-”

“You can’t leave yet,” I said, leaning forward through the shadows and smoke of the cabin. “We’re going with you.”

“I don’t need the help. I can take care of myself.”

“Not this time Norma, those aren’t CIA agents, those are inter dimensional beings called flyggian pony scouts.”

Norma looked at me with a suspicious smile. “Don’t act like I’m some naive school girl. I know what a pony scout is.”

And with that, Norma was out the door. Gun shots exploded in the darkness like camera bulbs flashing on her wooded stage. A red carpet spilled beneath her feet. Her attack was silent – violence at an efficiency matched by few others.

The quiet that filled the forest after she was done was complete. You could hear pine needles hit the dirt. Her heavy steps across the floor of the porch and then through the door – you could tell she was pissed. Norma sat down where she was, almost unchanged except for the freckles of blood she had attained in combat.

“How the fuck did you kill twelve pony scouts with six bullets?” I asked.

“Magic bullets,” Norma said with a twinkle in her eye. “How do you think we pulled off JFK?” A growl erupted from Bigfoot, which Norma silenced with a glance.

“I thought there was more than one gunman?”

“Well that’s just it,” said Norma. “There were no gunmen. There was a gunwoman, and a gun Bigfoot… and I don’t know what the fuck Mothman was doing. Mothman was the umbrella on the grassy knoll. I still don’t know where he’s coming from most of the time. Bigfoot was a terrible shot so I had to finish him off.”

“Where was Bigfoot?”

Mothman communicated telepathically to everyone in the room:

***bigfoot cannot be seen in direct sunlight***

“Where were you?” I inquired in complete shock.

“Dressed as Jackie. Had to make a getaway. Jumped out of the back of the car, but the Secret Service pulled me back in…” her voice trailed off. “Back and to the left. Back and to the left.”

“Oh…my…God. Why did you kill him?” The stare and silence between us could have stopped galaxies.

“Love and revenge. As simple as that.”

i sing the body electric

  
Yeah, so there’s my full name, the full names of two of my friends, and the bar I used to occasionally hang out in. That’s okay. Hi, I’m Elizabeth Roberts-Zibbel. That’s me, Facebook reminded me, with my friend Phil, four years ago. That photo makes me happy. Watching three particularly crazy episodes of The X-Files (Season 2) with John tonight while filling Easter eggs with candy made me happy as well. 

I went semi-anonymous here several years ago after getting in trouble at work (see “Open Letter to the Person Who Turned Me In“) which, just as I thought it might, began my slow painful departure from Parks & Rec and, eventually, the working world. I quit, pulled my retirement, planned to return to employment after some time off, but instead slid farther into illness and anxiety and applied for Disability instead. It was approved, though SSI payments have now stopped as we refused to jump through continued ridiculous hoops. Fortunately, we no longer so desperately need that money.

This weekend I feel closer to the person I was when I still worked, closer to the person I was when the above photo was taken. John just interviewed for a full time position at our local state university, instructing in the College of Education and Human Services. He quit his job teaching kindergarten soon after I left my job. We were both miserable. Neither of us wanted to live the rest of our lives the way we were, in jobs we hated, barely seeing each other or our children. It has been a long, ridiculously hard road since then, but we did the right thing. He also did the right thing again, quitting the very low paying and traumatic job he got in between.

John is likely to get this position. We’d be back on regular insurance, he’d be unionized, our daughters’ college educations paid for. Not only that, but he just started his own web design company, which I will run once he begins teaching full time on campus in the Fall. If he doesn’t get the job, he will still be teaching there as part time staff. His first class, Family Diversity, is going amazingly, awesomely well. He also designed the website which is allowing two of our hometown’s most beloved journalists to publish their own work, and own the rights to it, for the first time after our paper’s publisher fired one of them – this became somewhat viral news for a short time – for an editorial questioning the NRA (the other had quit previously over changes being made). If you’d like to check it out, it is http://www.bgindependentmedia.org. I do copy editing, obituaries, and arrange advertising space for the website. I am extremely proud of it.

My Etsy shop, http://www.windinthedoor.etsy.com, is successful on its own too. We are going to combine it soon with Zibbel Media. I feel like I have purpose, and worth. I still volunteer at the Historical Center, and am on the Youth Theatre Advisory Board, and am an active stage mom for both girls in their artistic performance endeavors.

Yes, it has been hard lately. I haven’t been to the museum in two months; I have been making once-monthly visits to the ER; my CGRP treatments for the study are over. My other worrying symptoms over the past year (see entry “Comorbid“) culminated in a trip to a new OB / gyn to see if my endometriosis had returned. It probably hasn’t, but I was found to have “pelvic floor dysfunction” and a visit to a physical therapist for treatment revealed that my pelvis was actually severely out of alignment, which certainly could have contributed to my chronic state. So far the physical therapy to fix the issue has only increased my pain. I had the horrible, demoralizing appointment with Dr. S, which I am only just now feeling recovered from. She did allow for my medication to be refilled, but with 0 or 1 refills only. I’m still “in trouble” is what that tells me. I had to stop the Corgard after once again being reduced to sleepy depression. As soon as I know whether I’ll be back on regular insurance, I will begin my search for a new doctor. I have not been back to the ER since February 26. I received a survey about that visit, so I did get the opportunity to thank the staff for treating me so respectfully, the opposite of my own doctor. The research nurse involved with my study sent the hospital a letter on my behalf, as well, though I don’t know if it will make a difference. I have not yet filed a complaint about Dr S but I fully intend to. The letter I wrote as a blog entry was not sent, though writing it made me feel empowered, and re-reading it still does, though at first I couldn’t see past the devastation brought on by my doctor’s harmful treatment. I don’t have to be a victim, or even a sufferer. I am still a survivor; a pain warrior. A success.

Success can be measured in different ways, of course. My daughters are healthy and happy, though I’ve realized Zo probably has some degree of Sensory Processing Disorder from her traumatic early birth. Neither of my daughters is intellectually brilliant, but emotionally and creatively they are both stars. John and I are stars too. We all are. 

Some days I feel happy, and capable. Other days I’m a mess. Chronic migraine or not… isn’t that just life?