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.

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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?

   

Migraine365: The Sumatriptan Series

In Fall of 1992, I believe, or maybe Spring 93, I took an Intermediate Poetry class with an instructor and poet named Tom Andrews. He was bald, soft-spoken. I don’t know if he encouraged me, after a number of missed classes and my explanation, to use my illness as muse; but then, I already had, in my fiction class and in my first poetry class. I felt the drive even then to make people understand: these “headaches” that had paralyzed me, left me shaking and bedridden and vomiting my entire life, when some people just took Tylenol for theirs. I was already using pain as art.

My first migraine poem was called “Sumatriptan” after the magical new drug whispered and passed between doctors and neurologists in hospital hallways like code. I was able to get my hands on this drug early, in tablet form, before it was accepted by the FDA, by driving the short distance to Canada. It was 1992. My first dose, a cylindrical wafer on the tongue, truly was a miracle, leaving me gasping in shock with tears streaming down my cheeks as every doom-spelling symptom vanished, the blind spots, the nausea, the weakness, the stabs of pain already emerging. 

As my experience with Sumatriptan grew, so did the poems. It was soon accepted by the FDA as an injection, (I still remember the Glaxo Auto-injector kit) which my 19 year old self ridiculously refused to use at first. “You will use it,” my mother snapped. And I did, with help from friends and boyfriend, and copying the numbered instructions down as another poem. “1. Remove Blue Cap From Syringe Case.”

Tom Andrews liked me. He must have. He graded my portfolio glowingly, writing, “You will have to sign your first book for me.” His own book of poetry, his second, came out in 1994, called “The Hemophiliac’s Motorcycle.” He was one. Who raced dirt bikes. A section of the book was called “The Codeine Diaries.” They were illness poems. He too had turned his pain into art.

Tom Andrews ended up giving me a B+ that quarter, which devastated me. When I went to ask him why, he intimated I may have done a bit too much flirting with my Nietzche-reading, hair-flipping writer friend in class and not enough active workshopping of others’ poems. Participation, bah. Would always get me.

I was very sad to hear that Tom passed away due to complications from his hemophilia in 2001. Around that time, J and I were getting married, having had our first art show collaboration a year before at the coffee shop / bookstore gallery where we’d met. “The Sumatriptan Series.” The first page of the series was published tonight on Migraine365. When J pulled it out last week, seeing it again took my breath away. 

Tom Andrews’ collected works, published by Oberlin College Press, is called Random Symmetries. I, myself, love random symmetries, and see them as signs from the universe that I’m on the right path. Another one I thought about as I worked with filtering and sharpening the Sumatriptan piece online was that I did have access to that landmark medicine earlier than most American migraineurs, having had a forward-thinking doctor, willing parents at $20 per pill, and the right geography. And now, just over 20 years later, having barely outlived Tom Andrews (he was only 40 when he died on a trip to England), I once again have access to a landmark migraine medication before most sufferers. The CGRP medications are creating more and more excitement, making more news, as success rates mount with few side effects, and it’s a preventative. I am so lucky to be participating in my study at MHNI, which just entered the open label phase. I have had one subcutaneous injection of the real thing, and 3 previous possibilities during the double blind phase. You know what I did today? I sat for 3 hours at the museum sorting dusty, 100 year old sheet music in a dimly lit room. Then I went to pick up prescriptions and bought a Reese’s Peanut Butter Egg, and I ate it in the car on the way home, while “Happy” was playing on my stereo, and the sun was shining as I crested the overpass and drove back into my small, fog-brightened city. It was freaking delicious.

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#MHAMBC Day 8: Dwelling On Dreams

β€œIt does not do well to dwell on dreams and forget to live.” ~JK Rowling.

I can easily imagine how many migraineurs for whom this quotation would really hit home, and in how many different ways.

For this month’s Blog Carnival (my first), I wrote about how I wouldn’t actually choose to live my life without my migraine disease, because my migraines made me who I am. (Of course the next day, in the agony of 6-8 pain for 15 hours, I changed my mind, but isn’t that always how it goes?)

However there is a difference between changing the past, and hoping for a better future. I wouldn’t trade anything that I have already been through but am always hoping for a more pain-free life, and the direction my care plan is going should lead to that eventually. Yesterday was the second official day of my girls’ summer vacation, and I was devastated to be spending another day in bed. I want to be able to spend as much time with my family as possible, and I want to be able to go on vacation with them for a week – we are leaving this coming Saturday.

J.K. Rowling’s wonderful quotation makes me think about living now, in the moment, and not deferring my happiness for a time in the future when I have reduced my migraines to two per week, or even fewer. The hard truth is that my present life involves being in pain more often than not, which is true for so many of us in this community. “The Daily Headache” and Migraine.com blogger Kerrie Smyres is such an inspiration to me in her positive attitude about chronic migraine: she refuses to call herself a “sufferer”; she accepts her disease as part of her life now instead of constantly wishing to be pain free.

As I recline in bed in “Treehouse Rest & Recovery,” as I’ve named my bedroom and convalescing space, inhaling pure oxygen from R2O2 (my O2 making machine and yes, we name everything), I am grateful that my pain is not as bad as yesterday. I am grateful to have a new treatment plan even though I still feel occasional narcotics would help me. I am grateful for every moment I get to spend with my family and every time that I am able to get out and do something. I will not wait for my pain-free days to increase to live my life to its fullest.

I can live now, and I will. There is no reason to wait. Happiness is inside us; there is joy to be found in the simplest of things. My daughters’ laughter, my dancing collie mix, my husband’s sense of humor, a good book, my online support community of migraine warriors and clusterheads. The support I get from Facebook, the constant love and patience of my parents and and their selfless actions on my behalf.

I have hope, and I am making changes in order to try to achieve that dream of fewer headaches. But for now? I still love my life. And I will live it, “every, every minute.”*

*From Thornton Wilder’s Our Town

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Good Things.

Very soon after I wrote the WWED entry, on February 18, things lined up in that magical way that sometimes happens, the way that makes me feel like the universe is letting me know I’m doing something right.

It started with panic. I had a week or so left of my Ritalin preventative, no Ativan, no Percocet. I was trying to get in to a pain clinic because my neurologist’s assistant couldn’t see me until April, and no doctor I’d called would take me. I began texting my mom for reassurance, and she said that maybe the change would be good. Then J’s and my best friend who’d moved to Florida several years before, S, began texting with me as well. His fibromyalgia had flared recently too, and as we compared meds and symptoms I admitted to Mom that perhaps I’d been a bit too reliant on my precious Percocet. J and I spoke in person at the same time about whether the rebound cycle from Percocet might often land me in the ER. But… would I have only Imitrex at home then? The thought made the panic increase. S told me he felt like there was craziness in the air. His clients at work felt it too. A writer friend from college contacted me as well, complimentary about the latest blog post. “Harrowing,” she called it. I hadn’t had so many rewarding, important conversations in a long time. I felt alive. Not at all confused about who I was. I confirmed to S, yes. There is craziness in the air, I feel it too. Oddly, he said, “Nothing we can do, maybe we should say the Serenity Prayer.”

I rolled my eyes at that, a bit. S had become nearly insufferably new-agey, doing reiki and chakras and all that sort of stuff. However from my week in a psychiatric unit 17 years ago I have a fondness for that particular prayer as well. The wisdom to know the difference. Asia began to dance around me frantically and J was out, so I got up, leaving my phone to charge (unusual for me to not have it on me at all times) and took her outside, into the deep snow.

I spent some time letting Asia play on the leash, and stood laughing at myself as I walked around in my pjs and boots and mismatched hat and gloves, poking through the crusty layers of snow and ice with a pointed pole I’d found in the garage, looking for Asia’s buried tie-out cord. I did not think about Dr. P or Percocet or the Serenity Prayer, but enjoyed the feeling of being loved by family and friends, the sense of strength, the hilarity of randomly poking a stick through the snow and playing outside with a dog while wearing pajamas. I did not think of J’s great aunt Sister Emily Fox, one of the magical Fox Family namesakes of my second daughter, the three good witches of J’s childhood, the only benevolent, kind family he had. His own grandma having passed years before, her sister Martha, the nun, following a few years later. Grandma was the nun drop out, having fallen in love with J’s shifty grandpa. This last sister, also a nun, had died just two days before, on Zo’s birthday, the namesake child herself. Magical. But I did not think of Sister Emily or the three Fox sisters’ fondness for the Serenity Prayer as I stood somehow gleeful in the dim February sunlight, in the snow, with my silly dog.

I brought Asia inside and went upstairs and sat down on the bed, reaching for my phone to continue the conversations which had so enriched my day.

It rang, and I jumped. It rang, jarring, the old fashioned ringtone which meant school, pharmacy or doctor’s office. I never answer my phone, believing if it’s important I can listen to the voicemail. The screen said “Neurology Clinic.” What could that be about? My heart pounded. Without thinking I slid the answer bar and said hello, this is elizabeth.

A very cheerful voice, a voice with good news to deliver, said “Hi Elizabeth, this is Julie from the Neurology Clinic. How would you like to come in for an appointment tomorrow at 10?”

And just like that, everything slid into place. Tears sprung to my eyes as I thought about how very nearly I’d missed this call, wondering how I had gotten so lucky when I’d never asked to be on a waiting list; in all the years I’d been a patient there, I didn’t even know they had one. I had just won the lottery. “Are you kidding?” I gasped. “YES! Yes yes yes! How?”

Julie laughed, delighted by my breathless response. “We had a cancelation.”

“It’s with C?” The headache nurse coordinator assistant.

“It’s… with T.” Not just the lottery then, but the mega-millions jackpot. My life had just been saved. Very nearly literally. The neurologist herself, who hadn’t had an opening until July. I told Julie I would be there with bells on and burst into grateful, disbelieving tears. I texted S and my college friend, and my mom, then called J, who was stunned into silence and then barked out a joyous laugh, the best noise I’d ever heard, and my grateful heart filled to overflowing.

The rest of the day remained amazing, miraculous. A friend who’d been testy with me about canceling plans apologized. I apologized in turn to another good friend, and others I hadn’t heard from in a while contacted me to say hi or to see how I was. I felt like a good things magnet. The oddest message was from my lactation consultant and friend, who said she was feeling “nudged” to tell me that Jesus died for my sins and loved me always. Still, I did not think of Sister Emily.

The appointment itself was everything it needed to be: scary and grounding and full of reminders of how far I’d come. I had detoxed off NSAIDS myself; had been off Percocet for weeks and had come to the conclusion on my own it wasn’t the best thing for me. Dr T agreed, and didn’t want me on Ritalin anymore either. Her goal was to get me to two treated headaches per week, with imitrex only. She prescribed Periactin, an antihistamine often used as a preventative for children with migraine. In fact it was the first preventative I’d ever been on, which felt perfect in that full-circle kind of way. She referred me to a pain therapist / biofeedback practitioner and to a headache workshop and said C would see me in 8 weeks. I left feeling very nervous, but at least I was no longer in such limbo.

On the way home, we passed the large cemetery by the river and J became visibly choked up. He gestured to the rows of graves swishing by behind the black iron fence as we drove. His grandma is buried there. “Sister Emily,” he said, his voice thick with tears. And then I remembered. Her funeral was taking place that very day, maybe at that very moment. Sister Emily had always loved and accepted me when no one else in J’s family would. She had learned reflexology in the convent, and once during a visit had massaged my feet, specific to migraine, describing the methodology as her tough, calloused hands worked their wonders.

Thank you, Sister Emily Fox, the last of my husband’s magic ladies, his protective trio of grannies. Thank you for his life and your love and for being the other pole of my good things magnet.

The day after my appointment with Dr. T, I had to go to the ER, but since I had just seen her I was treated well. Just one visit, one dose, and then for seven days I needed to treat only 3 headaches. This week has not been as good, but that is the way of migraine and I am not discouraged. And I know who I am.

On Thursday, February 28 I learned that my Disability was approved. APPROVED, after less than three months, on my first attempt. I am ready to send in the necessary financial documents in order for my monthly payments to be figured.

J’s second interview for a good job in his field is tomorrow.

Good things.

God[dess] grant me the serenity
To accept the things I cannot change
The strength to change the things I can
And the wisdom to know the difference.

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anger

Nothing makes someone with a migraine angrier than not being able to get the pill out of the fucking foil.

I just ripped down the collage I put on the wall by my bed because I’m sick of lying here and staring at it all the fucking time. I’m sick of this room, this bed, the smell of this house. My rotten skull.

Sir made me a beautiful double-sided playlist (like a tape). Peace Of Mind by Boston was on it. Nightswimming by REM. I realized how long i’ve been doing this. “‘I’m alive,’ she cried, ‘but I don’t know what it means.'” He had to turn it off because I curled into a ball and started wailing. Now he’s asleep.

And I’m awake at exactly midnight, the humidity hanging in the air and the moon almost full. And I’ve had this same headache for about 5 days, never getting severe enough to go to the hospital, but I am on my fourth Imitrex in 24 hours and I’ve taken 8 Zanaflex since 10 pm. It is like an agonizing fog with sharp edges. I just want to sleep. For a long, long time. And maybe I can hang out there, in sleep land, and be free of the shackles that pierce my stupid brain, my veins, pointy and jagged and always, always reminding me: we are here. And we will make you hurt in outwardly undetectable ways nearly every day for the rest of your life.

I sort of can’t believe I haven’t gone totally insane.

end of my rope

How many times have I been in this place? Where all hope seems lost? All options extinguished?

7 months post-hysterectomy, my precious miracle general practitioner who took me under her wing 5 years ago and had the guts to offer real solutions, to take on the trickiest inherited-migraine mess she’d ever seen, had to quit practicing medicine due to her own earth-shattering chronic illness, which I’d heard about but seen no signs of: MS.

Prior to this sudden announcement, the practice had terminated its “admitting rights,” meaning they would not be taking care of their patients who’d been hospitalized but would leave that to hospitalists, doctors who only work in that setting and are unfamiliar. Around this same time I started hearing rumors of a new state law making it more difficult to treat chronic pain with narcotic medicines in a hospital setting, and I’ve certainly seen evidence of that. My last hospitalization, in February, and ER visits over the weekend were simply hellish. And now I have no one who really knows my case and will back me up – each time it will be starting from scratch, each time I will have to fight for what I need. Sometimes I will get it; sometimes I won’t.

I feel completely abandoned and untethered. No safety net. I am seeing another doctor in the practice next week to discuss my situation and the possibility of her administering Botox, which she’s just learned to do. But I think that what I’m realizing is that I need to return to my neurologist.

Just when I thought things might be getting better… the rug is pulled out from under me once again.