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Faith is 24 Hours of Doubt and One Minute of Hope

The headline here came from a young nun in the French film. The Innocents, which I watched today on a sick day from work.

In the last seven days I’ve had three migraines, two of which have required absences from work. Coming after nearly a month of comparatively carefree days, that nun’s definition just struck me.

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This is what democracy plus a splitting headache looks like

Yesterday I ended my month-long streak of no migraine-related work hours lost when I left work early with a doozy. I thought getting a little fresh air during lunch would help (it didn’t). One of only good things about working close to Trump Tower means close proximity to protests--and I have a feeling that lunchtime protests are going to become the norm pretty soon. I may have had a migraine, but clever signs and one little girl’s #NotoriousRBG tee-shirt made my day anyway.

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With Love to Uncle Bob

When I was asked to be a godparent to my nephew, Henry, I immediately said yes. Easy job, right? Stand up, gaze adoringly at the sleeping infant while the minister lovingly pours water the child’s perfect, beautiful head. Easy peasy. The fun part comes a few years later when that giggly, quick-witted kiddo gets old enough to spoil with hugs, road trips, and about a million spins on playground equipment. My completely uneducated guess: it will only get more rewarding as he grows up.

(me, with Bob and my aunt Pam, post-holy water dousing)

Then there’s the part about looking after the child’s spiritual development and religious welfare as they grow up. That’s a bigger task isn’t it? But I’ve had many, many had good role models. One of them was my Uncle Bob, who passed away suddenly yesterday morning.

My childhood is filled with memories of Bob in the uncle role—spoiling us with trips to Rip’s, to Owatonna, Minnesota to visit our cousins up there, and what in retrospect feels like dozens of rides in his blue pickup truck. In his bachelor days it seemed like he had all the time in the world for us. And reading his writing over the years, he’s mentioned his love for his nieces and nephews almost as much as he’s expressed his love for his wife, Rowena, and his love for God.

(my sister fishing with Uncle Bob)

(Bob with baby Malia, and proud sister Naomi)

I’m not sure I ever adequately expressed to Bob what a beautiful job he did looking after my spiritual wellbeing. One of the things Bob and I shared, aside from Catholicism, is a lifelong struggle with pain, doubt, anger, and probably depression from dealing with all that pain. We both have neurological diseases and symptoms that kept us from being with our families in the way we wanted to be with them; from enjoying our careers as fully as we’ve wanted to; sharing our gifts and love with others the ways we’d like to. My faith, for sure, has wavered, if not outright been ignored. But Bob always encouraged it along, sharing his own hardships, frustrations, and doubts.

Charcot-Marie-Tooth Disease put Bob in a wheelchair in his twenties for periods of time, but he was able to walk and engage in all the activities of daily living during my childhood and most of my adulthood. The last five or so years have been difficult as his symptoms returned and injuries forced him to retire early. He was a gifted and honest writer, his struggles and frustrations palpable. The last time I saw him was at my wedding in 2012. But, unfailingly, he checked in, usually when he knew I was feeling down and struggling with migraines.

A couple weeks ago I got an email from him asking for my address. He wanted to send me a card after my hospitalization in Michigan. His letter came late last week. In it, he told me how often he prayed for both me and my cousin Naomi, who also shares the migraine gene, and an unfortunate tendency to develop meningiomas requiring surgery. The letter included the Serenity Prayer on top and his own reflections below.

He wrote, “I know well how an illness can take over a person’s life, but I see how you each fight back against this great burden. You are both living out your lives with a greater clarity because of what you have gained from this struggle, which is to live your lives to the fullest, living lives of great purpose, and living lives shared with those you love. We are so proud of you. You both are ever in our prayers and thoughts.”

I only hope I can live with as much purpose and courage as Bob did.

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Things No One Tells You: Migraines, College, and Disability

At first I wanted to write about the tangible fog that lifts when I haven’t had a migraine for two weeks—though that streak broke yesterday. Then I remembered I’ve covered that before.

Instead, I want to focus on something I originally wanted to do with this blog, which is share things I’ve learned from having chronic daily migraines for 24 years.

When I was at the inpatient unit I had some serious flashbacks to much harder times because of two teen girls I met during group activities. One was a home-schooled 16 year old. The other, 19, was on medical leave from Tim Horton’s, where she had forced herself to work 12-hour shifts while heavily medicated. She loved her job but never thought to ask about accommodations for her condition. So, for the past several months she’s been staying in her darkened bedroom attending only to her dogs.

I could relate to both of girls. If either of them choose to go to college, though, I hope they find this blog, because there are a million things nobody ever told me that could’ve made it much easier from the beginning. The piece of advice I have right now: if you’re a migraineur, find your university’s office the deals with students with disabilities, STAT.

It wasn’t till my junior year that I found out my school had one. The only reason I found out was because I was researching an article about college students who had to navigate their campuses with a wheelchair. I was interviewing one disability advocate and asked, by chance, if migraines could be considered a disability. She said they absolutely were. By the time I turned in the article, the semester was over but I was preparing for summer classes and decided to check in with my school’s disability office to see what services—if any—it could offer me.

My academic advisors were apologetic that they hadn't thought of this option sooner. Honestly, though, I seriously lucked out where instructors were concerned. When I was sick, they understood, and very few hassled me.

That being said the disability center was a godsend. I found out I was eligible to have designated notetakers for when I missed class; I could ask for longer deadlines for completing assignments; I could take exams orally instead of written essay tests; I couldn’t be penalized for illness-related absences, and if I couldn’t get everything completed before the end of the semester, professors could submit my grades at a later date.

It might not be obvious to outsiders why these accommodations would be helpful, but anyone who knew me well during the harder patches of college gets it. Not only was I still dealing with some level of pain daily—I was battling the side effect of over a dozen medications. It was at times difficult to tell which was more debilitating—headaches or side effects. I was so forgetful that I would show up to classes I’d been going to for weeks at the wrong time, or the wrong day. In the days before cell phones, I would blank on frequently used phone numbers. I avoided classes that required rote memorization, but remembering even basic material in the time allotted for exams left me scrambling. My meds were so sedating that even when I was in class I dozed off, rendering my notes unreadable. I napped constantly between classes. Pulling all nighters to finish a paper or study for a test is unadvisable for people with chronic pain.

Had I known the disability center existed when I was a freshman, I might have passed econ the first time!

Migraineurs on the whole, at least the ones I know, are a conscientious bunch. We don’t want to cause anyone else extra work, get in their way, or most of all, explain why we can’t do something, whether it’s attending a social event or getting to class.

So at the beginning of every semester, I’d meet with every professor and give them paperwork from the disability center asking for certain accommodations. The paperwork stated that they couldn’t ask me what my condition was or make me explain my symptoms. I was always willing to share, but I can think of a million conditions that would be uncomfortable to discuss with a stranger.

This also taught me another important lesson: it’s OK to ask for help. We all need it and most of us still avoid it.

(On a lighter note, I created a new, sunny writing nook in our condo. Isn’t it cute?)

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That feeling when you haven’t had a migraine for 14 days.

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Do you know me, love me, or are related to me through marriage? Thank an immigrant.

It is hard not to take President Trump’s xenophobic, inhumane, and deeply cruel immigrant ban extremely personally.

I am the proud daughter and niece of two German immigrants who came to the United States after World War II from Berlin. My grandmother (Elizabeth Linke) fell in love with my grandfather (Roger Vail), a G.I. after the war, when she and other Berliners were starving in the immediate aftermath and for many years after the fact.

Like many Syrians, especially those living in Aleppo, Elizabeth, her brother Klaus, and my great grandparents Mutte and Pop, were bombed out of their homes upwards of four times during the war years. The heartbreaking picture of that Syrian boy pulled out of rubble could have been Klaus, who was slightly older during the bombings than he is pictured here:

After the war, when there was little to eat, Elizabeth--like thousands of German women--was stalked by Russian soldiers who committed thousands of rapes in the occupied sectors. Women in Aleppo are suffering the same fate. 

Elizabeth was able to make it to the U.S. a few years after the war; Klaus, Mutte, and Pop followed in the 1950s. They moved to Chicago’s German neighborhoods in present day Lincoln Park. Elizabeth moved to a farm in Tiskilwa, Illinois, where she and Roger raised seven children, including my mother.

So what’s the biggest difference between the Linke family and the average Syrian family? When my family needed food and refuge, President Harry Truman treated war torn refugees with compassion and humanity and welcomed them to the United States. Perhaps a few years too late, but still a shorter length of time than the time Middle Eastern refugees have waited to be granted entry. This, after fighting a long and bloody war--even bombing their homes. Then, America offered opportunity. Now? An all too clear message that says: You are not welcome, at least by our current administration. 

Locals were suspicious of Elizabeth, being that she was Catholic and German. She died when I was a baby so I can’t ask her what that was like. I’m not sure that Klaus was old enough, then, to intuit suspicions, and I can’t ask since he died about 10 years ago. But it’s safe to say that refugees from the Middle East today would face much greater backlash. Look at the treatment and hate crimes committed against Muslim Americans who were born here. Especially if Trump follows through on his promise to publicly list the crimes committed by immigrants.

But Here’s the Thing

When we ban humans of any background from our country, we’re effectively saying: we don’t want contributions from any of your future descendants either.

Roger and Elizabeth had seven children; Klaus and his wife Vi raised three of their own. My mere existence on the planet hinges on a president who ultimately agreed that despite a VERY, VERY, VERY minimal threat of admitting former “enemies” of this country onto our shores, providing sanctuary to those in dire need was more important.

Pictured above: 3-year-old me and Klaus.

Because these two individuals were welcomed to our country, the contributions of their children, grandchildren, and great-grandchildren--to this nation are almost too numerous to quantify. I have uncles and cousins who have served in almost every branch of the military. My mom and aunts are nurses, providing comfort and compassion to the sick and disabled. I have aunts and uncles that have welcomed dozens of foster children, including Vietnamese refugees. I have smart, amazing cousins working in the intelligence communities, in the military, and for the US government. I have other cousins who work hard to help the homeless find housing. My sister works in pharma helping to create new drugs for people (like me!) who live with pain and chronic disease. I have relatives that work with disabled children, who are youth pastors, and who are parents to beautiful, smart, and courageous children. And then there’s me, a journalist, who’s committed to telling the stories of these very people and others like them.

So before you dismiss immigrants as dangerous terrorists who threaten our democracy, look at my family. There are millions of us who exist because the U.S. let “undesirables” contribute to everything that makes this country GREAT ALREADY.

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Protest ‘Lite’--Chicago Women’s March

For two weeks I wasn’t sure if I’d be able to participate in Chicago’s sister march to the Women’s March on Washington. Well it turns out I was so excited, I got out of bed an hour early because my phone was still stuck on Michigan (east coast) time. I was pumped. The sun was shining for the first time in weeks, I was pain-free. This is my game face.

Then I joined my friend Mary and some very excited ladies from church, and hopped on a packed-to-the-gills train. Middle schoolers were singing songs from “Hamilton.” Men and women were wearing pink pussy hats as far as the eye could see. Despite the crunch people were upbeat and happy. This was the happiest I’ve been in months. The mood was contagious and it will get me through the next four years.  I heard constructive conversations, encouragement, and LOVE, LOVE, LOVE.

I will stay angry.

I will not accept the new normal.

And I will bust my ass to advocate for the millions who stand to lose so much during this administration. But I will do it with love, certainty, and JOY.

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Evil Pharma Company Jacks up Migraine Drug to $11,000

Lo, about 13 years ago I was for the first time prescribed a migraine drug called methergine. It’s old school--chemically it’s similar to LSD. When ingested orally, it can be unpleasant--hot flashes, back cramps, chest tightness, to name but a  few. But, I’ve generally responded pretty well to it. A rare thing indeed.

Like many migraine drugs, it was discovered serendipitously. It was originally developed for the prevention and control of postpartum hemorrhage. Because of its vasoconstriction properties it became an ideal remedy for the vascular component of migraines.

However, until recently, this medication, though sometimes hard to stock for some pharmacies, was affordable. That was, until evil pharma company Lupin Pharmaceuticals bought it from its old manufacturer, rebranded it, ditched the generic version, and jacked up the price to $11,000 a month! Since it’s being heavily marketed for uterine bleeding, a temporary condition following birth or a miscarriage, Lupin has a captive audience as the drug is only needed in the very short term for that indication.

According to a Lupin press release: "With Methergine, Lupin is making a significant investment to help improve the management of PPH, providing professional medical education, leveraging its specialized sales force to drive better awareness and access to care, and ensuring a more stable supply of this essential medicine."

How benevolent of them.

Because I have an employer provided “Cadillac” insurance plan, I pay $30 per month. And even at that, insurance will only cover it in two-week intervals, meaning I have to refill it twice a month. If you have crappy insurance, GOOD LUCK. If you have Medicaid, forget it. My nurses filed several urgent preauthorizations to allow me to go home with it.

Big box pharmacies saw this coming and have stockpiled it. My doctor tried to help guarantee the price wouldn’t skyrocket. The company lied to him.

Angry yet? Let them hear about it: http://www.lupinpharmaceuticals.com/contact.htm

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I’m feeling optimistic at the moment that I can participate in Chicago’s Women’s March on Saturday–I’m getting sprung outta this joint tomorrow. But this is exactly what I was looking for in the event I couldn’t join. Thank you Sarah Wibben for the details!

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'Hell Yeah, Obamacare' at the End of His Term

I want to be clear as I sit in the hospital and watch Congress misguidedly attempt to dismantle a social program I desperately prayed for and spent the last five years reporting on in my day job: if The Affordable Care Act goes away, I will probably be OK. That is if both Jeff and I keep our very generous employer provided insurance. Even if it happens, though, any uncertainty in the market has the potential to impact everyone.

I do not have cancer or anything fatal. My copays are manageable and I don't have to worry about lifetime payment caps. I do have to remain vigilant, file appeals, and study my pharmacy formulary with a microscope.

But eight years ago this week I was in a very different place; the week Obama was sworn into office was the same week that I was laid off alongside 10% of my coworkers. Our fate was sealed when the banks failed in October 2008, but the company waited till after the holidays to drop the axe.

When you have chronic health issues, the loss of reliable, affordable insurance is terrifying. Lucky for us, the Administration acted quickly and ARRA (the American Recovery And Reinvestment Act) cut our COBRA premiums in half and extended unemployment benefits well beyond the typical period. I got by and I was in good company. Most of the journalists I know have been laid off at least once and a surprising number, like me, have faced it more than once. Back then I was single and couldn't, like many colleagues, hop onto a spouse's plan. My parents still helped me pay my drug bills since my lifeline, Imitrex, could easily cost $100 a pop. My rescue injectables could be $200 for five doses, and that doesn't include daily preventives.

However, when ARRA's benefits ran out, I was dropped from COBRA and forced into the private insurance market with three pre-existing conditions. I was barely squeaking by on modest freelancing and occasional contract gigs. As many people came to realize, the economic recovery was built on the backs of contract workers who have no benefits. I panicked. I cried. I called my legislators and state insurance board.

I was turned down by at least three major insurers before I finally got coverage through the insanely expensive high-risk pool known as CHIP in Illinois. I believe my premium was $450 a month with standard, not terrible drug coverage. On a minuscule income I survived for four months until I finally found a full time job after 18 long months. I shudder to think what my options would have been reduced to if I had to go on Medicaid. The drugs I need to keep me functioning aren't covered by Medicaid--which very well could have been a gateway drug to SSDI. The ACA at that point would have been a lifesaver but was then still a pipe dream, facing repeal efforts and SCOTUS battles.

Two years later I was laid off again but thankfully had coverage through Jeff's job. I counted myself fortunate. Now that I've had another steady job with the "Cadillac" plan of PPOs, I thank God every time I wait in line at Walgreens, or get approved for a treatment or medication that would have cost hundreds five years ago. I'm hanging onto my job through the grace of God and a lot of flex time working on weekends, because dammit, I love my Cadillac coverage.

I know how all too well this could fall apart. I could have a chronic condition in which insurance companies make people jump through a million cheaper, ineffective drugs before they will pay for the ones that work. My drug regimen changes every day here and I'm finding out that previously cheap drugs have had prices reach new astronomical heights. Again, these are migraine drugs, not some unapproved compassionate use, experimental cancer meds. Just drugs that keep me somewhat on my feet.

So if you care about me, my family, and the untold millions who need insurance JUST TO STAY alive, please call your representatives and fight for the ACA's continued existence and for crying out loud, get covered while you still can. Getting your own coverage keeps prices lower for the rest of us who pick up your tab when you fall off your bike or slip on the ice or face a catastrophic event. Don't trust Trump's "terrific" but vacuous plan, and don't believe for one minute that Paul Ryan actually cares about you. The ACA isn't perfect--no law ever is. But it can be built into something lasting and transformative if we can get past partisan bickering.

Here are Republicans willing to do that. Call them and tell them you support them. I know I will be.

They are: Senator Bob Corker - (202) 224-3344

Senator Lisa Murkowski - (202) 224-6665

Senator Rob Portman - (202) 224-3353

Senator Susan Collins - (202) 224-2523

Senator Bill Cassidy - (202) 224-5824

I may be stuck in bed on Friday when I'd much rather be in the streets carrying a sign, so here is my protest. It's hard to be surrounded by sick people and not wonder what our lives would be like without insurance.

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How I feel after nerve blocks in my neck with a suddenly bobbly cranium--and too unbalanced to walk across the room alone. But pain free!

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Around the 'Block'

It's a minor betrayal, for sure, that the last four days feel wholly unrepresentative of my day to day experience. For more months than I can count, every day has been a monumental slog to get to work, power through the day, and have any fuel left in the tank for nonessential activities--every day an experiment of spoon theory. Every day that I make it through work is a minor miracle. It was my great hope that this hospitalization would turn that around. Hope is not the same as expectation. So why am I disappointed that I feel terrific today, one marcaine nerve block down and a cervical facet block remaining? I think it's because I fear the pain will return within the first eight hours without an IV dose of DHE, Thorazine, and Benedryl. It's damn near impossible to replicate the efficacy of IV medications orally and completely unrealistic to have a plastic surgeon or anesthesiologist on standby all the time. The hospital isn't the real world; as much as I miss my king size bed, letting someone else figure out my medication schedule and meal planning is a glorious trade off. Temporarily that's just fine with me. One of the benefits of having lived with this kind of pattern for so long is that I don't let myself give into this kind of fear anymore. The fear of pain keeps me from living in the moment--and that's the only place you can live. Now, the nature of this post has nothing to do with Martin Luther King Jr., but an ACLU Facebook post quoting him matched my attitude about my current situation (and many other topics that have been on my mind) perfectly, and it would have resonated no matter who said and regardless of context: "We must accept finite disappointment, but never lose infinite hope." Agreed. (My facet block is early this afternoon so perhaps I'll write about it when the Versed wears off).

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Scenes from a #medcation

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Hospital media list:

Books: “Pussy Riot! A Punk Prayer for Freedom” “1776” by David McCullough “Girl Walks Into a Bar” by Rachel Dratch “Kindred” by Octavia Butler “Good As Gone” by Amy Gentry “The Invention of Wings” by Sue Monk Kid

Podcasts: Making Oprah Wait Wait Don’t Tell Me Invisibilia This American Life back episodes WTF

Currently accepting suggestions!

Streaming The Man in the High Castle season two Mozart in the Jungle The Crown The Night Manager

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If you hate giving out your Social Security number constantly to confirm your identity, this doodad is one of the most secure ways to change that. Palm prints are much more unique than finger prints, and palm scanners are a cutting edge technology when it comes to identity protection. I was thrilled to see one in a small community hospital.

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Morning visit with Molly the therapy dog.

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Day #1

This is the first time I've been treated in the hospital for migraines in what I consider to be my adult years--not that I wasn't an adult in college or immediately following college--but I didn't have the responsibilities of adulthood that I do now. I never had to explain to coworkers what I was doing for such an extended period of time, I never worried about my ability to pay a mortgage, and I certainly never acknowledged that I'd ever be bringing a spouse along for the ride. I was too superstitious to try and predict what that might be like. So on my first full day on an inpatient unit, and while I'm feeling good, I wanted to document the experience as a grown up. To let people know what migraineurs go through when they're missing from work, and what medical treatment can and cannot accomplish in this baffling and complicated disease. Too often I notice what medicine can't fix--where it falls woefully short. Most importantly, I can't emphasize enough how none of this would even be possible for me without insurance and I shudder to imagine what it's like to have chronic pain without many options, let alone good options. People with chronic pain tend to be warriors when it comes to fighting for healthcare access, both for themselves and for others. I am no different. Watch your back, Paul Ryan and Mitch McConnell.