On Grieving, Celebrating, Writing, & Auditioning

This is a piece I wrote for the alternative local news site J created and maintains, for which I now work. It is a personal story of my experience of the celebration of life service for a beloved choral director. It is published, with additional photos, here.

What was so valuable for me in writing this piece is that after I published it and re-read, I realized that the thing with the Christmas lights wasn’t my real Mr. Brown Story. My regret over not auditioning for Madrigals actually changed the way I parented. I encouraged the girls to try out for things, to go after the dance parts and musical theatre roles and to be brave. And they did, and continue to, creating the best friendships and experiences of their young lives. Which was indirectly about Mr. Brown and is truly life altering.


From the news website BG Independent Media:

St. Mark’s Lutheran Church in Bowling Green was nearly full for Jim Brown’s Celebration of Life service Saturday morning. I scanned the crowd as people filed in, looking mostly for those I remembered from high school. We sat in the section to the right of the pulpit with other members of the Memorial Choir. Stacey (Timmons) Higgins from the Class of 1990 was sitting on my left; Amanda Gullufsen, a fellow graduate of the Class of 1991, was on my right. Both had been Madrigal Singers with Mr. Brown in High School and had traveled with him to the former Soviet Union as it was crumbling. I had been in regular Choir my 10th – 12th grade years, singing such memorable pieces as “I Sing The Body Electric” (from FAME) and the Rutter Requiem. Unsurprisingly, Mr. Brown had known John Rutter personally.
My husband, John Zibbel, had graduated from BGHS some years after me and had been fortunate enough to be a student in the first Humanities Class co-taught by Mrs. Dianne Klein (Former English / Creative Writing) and Mr. Brown in their last years teaching before retirement. John’s class in the 98-99 school year was themed “Making The Midwest Home.” They traveled by bus to Chicago, Cleveland and Pittsburgh. In speaking about the Humanities class, Mrs. Klein stated that due to the closeness that the groups experienced from traveling around the country together, the students became family to Mr. Brown as much as his own blood relatives. John’s classmate Jessica Snyder Ruffner commented, “The humanities class had a major impact on me and I am forever thankful to her [Klein] and Mr. Brown for choosing me to participate.” I know John felt similarly.
As I continued watching, I spotted Class of 91 alumna and friend Michelle (Whitacre) Crites. I saw Dr. Eric Myers, former principal of BGHS and school board member, and Mayor Dick Edwards and his wife Nadine. And Andy Halleck. “Did you know he was a Madrigal my senior year?” Amanda whispered to Stacey. “He had chops!”

I was happy to hear this, because as well as being his student, I had also been Mr. Brown’s neighbor, living with my parents and brother diagonally across the street on North Prospect. Mom had told me Mr. Brown’s stately Victorian had been purchased by The Hallecks, and being reminded that Andy had been a Madrigal made me feel pleased that he would be honoring the memory of Mr. Brown which surely infused the house. The positive impact Mr. Brown had on those elite, beautifully-voiced Madrigal Singers through the years was always very evident to me. They were the best of the best, braving auditions I was never able to face.

“I was trying to think of a ‘Mr. Brown Story’ to share, and I couldn’t think of any at first,” Amanda confided in a low voice while we waited for the service to start. Her mother, Linda Gullufsen, was the director of the Memorial Choir and a former colleague and dear friend of Mr. Brown’s. At the first rehearsal, she had stated, Everyone has a Jim Brown story, and she had shared a few of her own through tears. Amanda continued, “I finally thought of one. He gave me the only B I ever got. And it was a B minus! In Choir! When I went to him to ask why, he looked at me and replied simply, ‘Just shut up!’” She grinned. The admonition had been spoken in a direct, but light hearted way. “And oh, I knew he was right. I was a talker for sure. But what was I supposed to do? I was in the back next to… oh you know, Alex DePue. And Dave McCutcheon. But he was right, and I learned so much from that.”

While the organ prelude rang out through the church, I thought about my own Mr. Brown Story. What could I say about him? He hadn’t changed the course of my life. I hadn’t traveled with him the way Stacey, Amanda, and even my own husband had. But, I was his neighbor. And I thought about how beautiful his house always looked decorated for Christmas, and how sad it was the first Christmas after he’d passed away to see it dark and bare. My friend and neighbor Geoff Howes had even written a haiku about it. But during my junior high, high school, and college years that house had been the beacon of holiday cheer, and when Mr. Brown’s white lights and garland went up, we truly knew the Christmas Season had arrived. That, then, was my story.

The service started and the congregation sang a hymn. Then there was a prayer, and Mr. Brown’s younger brother, Bob, got up to speak. He thanked Mrs. Klein and others for taking care of his older brother’s health when he hadn’t been able to; and thanked Mrs. Gullufsen, Mrs. VanBlaricom (former BGHS German teacher) and others for putting together the Memorial Choir, a group of former students, colleagues, and friends of Jim Brown’s spanning fifty years who had been moved to travel from near and far to sing and remember him. Bob then told stories about Jim as a child; talked about Jim’s love of music and theatre and directing and how a severe illness his senior year of high school got him started on piano; talked about his travels, and all the famous people he’d met. Bob became too choked up to speak at least once, and made everyone laugh several times. He then leaned over, looked at Reverend Spicer almost impishly, and apologized to him in advance before telling the final story. He talked about going to visit his brother, whose name just happened to be James Brown, a common name he shared with another, rather more well known musician. Bob said that he would do the James Brown yell for his brother, and he did it right there. “AAAOOOWW! James Brown! I feel good!” And he said his brother Jim would be always be embarrassed, and afterward would whisper an affectionate, brotherly “Stop it.”

Then Bob told us all to stand, and to yell it with him. So we did. “AAAOOOWW! James Brown! I feel good!” Do it again, he said, and we obliged. Then he paused and whispered into the microphone “Stop it.” The church erupted into spontaneous applause, which felt only natural at a celebration of life for a consummate showman.

Daniel Boyle, also from the class of 91, accompanied the choir on piano and had composed a gorgeous original piece called “Thank You, Mr. Brown” which he played beautifully. Next to me, Amanda dabbed at tears with one of the tissues Stacey had thoughtfully given us before the service. Dan also played the postlude on organ, the Widor Toccata, which he later said he had just played for the congregation at his own church for Easter.

Soon we were standing up and joining the other choir members on the risers for “Breathe On Me, Breath Of God.” The story about this song is that the Madrigals sang it in Estonia, in a building so cold they actually could see the white plumes of their own breath. Having attended only one of the rehearsals I was sight reading, but I was proud of the way I had no trouble keeping up and blending my rusty alto with the voices of the rest of the choir, one eye on Linda’s flying hands. As I had many times before, I regretted not having had the courage in high school to audition to be a Madrigal myself. And was proud, thinking about my own young daughters and how I taught them to start auditioning for theatre and dance parts early, to never be afraid to go after what they want and to believe in themselves in a way I never had.

We stayed on the risers through a reading, then sang “Alleluia.” When we were finished, the congregation was once again moved to applaud. We sat down.

Mr. Brown’s nephew Kevin read the Gospel with the familiar words “I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live,” and singing the Rutter Requiem came back to me, with the flute and the timpani and harp which accompanied us, and those same words. “And whosoever liveth and believeth in me… shall never die.” I was wiping my own tears then.

The Meditation by Reverend Spicer was very nice, and a smaller group sang “Sing Me To Heaven,” which Mr. Brown had chosen for both his parents’ funerals. Then it was nearly over and time for the Hallelujah Chorus. Michelle, from the congregation (I keep wanting to say “audience”), posted a video of it later and wrote “The Hallelujah Chorus was sung at the end of every Jim Brown Christmas concert. He invited all previous singers that had sung it in years past to join his current choir on stage to sing as one large choir and it was always beautiful. Today’s memorial service ended the same way. Very touching tribute to a wonderful man.”

After the service, I felt the familiar flush and drone of a migraine coming on, so I didn’t stay for the catered luncheon. I later asked Stacey to describe it for me. She said there was a presentation made by Dr. Myers and Linda VanBlaricom to Francis Scruci, current superintendent of BG Schools, of a plaque commemorating Mr. Brown to be hung in the lobby of the Performing Arts Center, inscribed with the lyrics of “Sing Me To Heaven.” Brother and nephew Bob and Kevin Brown shared touching and humorous stories about his life, and were followed by loving tributes from former students Andy Newlove, Molly Ogden, and former colleagues Jan Woodend (German teacher) and Linda Gullufsen. The event ended with the serving of Mr. Brown’s favorite dessert, ice cream, which was enjoyed in the camaraderie of those whose lives he touched.

I’d like to end with the comments of two Madrigals who are friends of mine from high school and could not attend, made on Facebook after viewing J.D. Pooley’s lovely video of the Memorial Choir’s first two pieces, and shared here with their permission.

Jeremy Smith, Class of 92, wrote “I just sang w/ the basses in my living room. God bless you, Jim.”
Chris Hutchinson, Class of 91, said “I was fortunate enough to be part of the Madrigals that sang Breathe on Me Breath of God in the Soviet Union. To hear it again sung by this group as a tribute to Mr. Brown really caught me off guard…in a good way. It sounds amazing and really brings back a lot of incredible memories.”
And finally, some last thoughts from Linda Gullufsen on her way back home to Tennessee with her husband Rex this morning. “The Memorial Choir came together, not for a choral performance, but as 70+ individuals wanting to pay tribute to their teacher, colleague, mentor, and friend. A community of singers was thus created from 15 states, 2 centuries, and a dozen different choral ensembles that spanned 5 decades. We came together for one brief moment to celebrate Jim’s life. I told the singers that this experience would grow sweeter and more precious to them over time, that it would become one of their cherished memories. And I believe it will. In the words of a song from the musical Wicked, ‘Because I knew you, I have been changed for good.’”

Thank you, Mr. Brown.

“I look back on Venus, look back on Mars / And I burn with the fire / Of ten million stars / And in time, and in time / We will all be stars”

-I Sing The Body Electric

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?

   

Dear Emergency Room: A Story of Love, Despair, and a Life Less Ordinary

Update #2: so it turns out I am not going to send this. While at first the purging of such strong, righteous emotion even just for the blog felt satisfying, I am now so depressed I can barely move. My hands are tied, I’m helpless as always, and my head still hurts. The risk of alienating myself and burning bridges is too great. So what do I have? Pain, sadness, and a doctor who wants to bury me. All I am is a victim, the last thing in the world I ever wanted to be.

{see below for update #3}

Dear Mr. K and Staff,

First of all I want to extend my deepest thanks to you, and particularly the ER doctors, PAs, and nurses who have been tending to me and my severe migraines, vomiting, and dehydration when I have no choice but to seek your facility’s assistance in breaking my toughest symptoms after my methods at home become ineffective. The courtesy I am always shown (kindness and respect, lowering of lights, seeking isolated rooms to decrease noise, adjusting blankets and pillows) comforts and soothes the panic I feel at those pain levels. When I depart, fully hydrated and with pain reduced from an 8-10 to a 3-5, I feel immense gratitude, and not just because of the significant relief in my unbearable symptoms.

I know that treating chronic pain in an ER setting is a tricky proposition at best. Before succumbing to an ER visit, I will have been in bed several days prior, having used imitrex tablets, imitrex injections, zofran pills, phenergan, and a muscle relaxer in hopes I can sleep through the migraine and its myriad additional symptoms or at least lower the pain to a tolerable level. I have a prescription for traditional pain medicine as well, but use it only early in the process and do not keep attempting to add it to the mix, since if it doesn’t work in the earliest stages, it will not work at all. And at a certain point, everything I have at home fails to impact the pain, which is when I wrap myself in my “Frozen” fleece blanket and lay myself, desperate, at your feet.

Unfortunately, my visits have been around every 4 weeks this past year. During my pregnancies in 2004-5 and 2008-9, and before my hysterectomy in 2011 (for severe menstrual migraine and endometriosis), I would sometimes need to come in several times per month, at every ovulation and usually twice during menstruation. In July 2011, Dr. H (oh how I miss her!) and local OB/ Gyn Dr. P decided I would benefit from a hysterectomy (even at the ripe young age of 37). After the surgery and subsequent hormone adjustment, my situation improved significantly (though disappointingly, I was still chronic). During the years of 2012 to 2014, I was able to come to the ER much less often. This variance is the nature of the beast, and I have become used to it, always hoping the easier times will last while knowing better than to count on it.

Chronic migraine, or any form of migraine disease, cannot be cured. I will never get better in a permanent way. Some years are better, some are worse. The illness ebbs and flows, and is impacted by weather, stress, other sickness (such as sinus infections), and on and on; or will worsen for no reason at all. This year, I would call what I am experiencing a moderate flare-up of symptoms. Fortunately, right now I am able to spend time volunteering at the County Historical Museum; enjoy being an active member of the Youth Theatre Board, and most importantly, I am getting to spend quality time with my children while they are still young; as opposed to other time periods when I am virtually unable to leave my home for weeks at a time, often confined to bed.

A few policy changes have occurred which also have required me to make more frequent ER visits. When doctors were allowed to have their own patients admitted for inpatient care, I would be hospitalized for 2-3 days about twice per year to break up severe cycles, which would cut down on individual visits to the Emergency Department. There was also a time when certain rescue medications were able to be administered right in my physician’s office. Now neither of those options is available. I know hospitalists can choose to admit patients, but without being as familiar with me and my case, that is always a tough call and I usually prefer to recuperate at home since the hospitalist would not necessarily know what had always worked for me during an inpatient stay.

In 2013, I could no longer continue working ~ a terrifying financial nightmare. I was approved for Disability on my first attempt, rare for invisible illness, which means I was able to prove my complete debilitation and the fact that I had tried every possible avenue of care with only temporary success, or more often, none at all. Some of my attempts include:

• Botox administered by Dr N, a headache specialist  (6 treatments total – less effective each time)

• Physical Therapy

• Cranial-sacral and other massage with muscle stimulation

• Chiropractic care

• Hypnosis

• Homeopathy

• Acupuncture/ pressure

• Nerve block injections

• Every preventative medication available. All beta and CC blockers; all tricyclic antidepressants; various SSRIs and SNRIs; anticonvulsants (Depakote, Neurontin, Lyrica, Topamax); Lithium, Haldol, Trazodone. Ritalin. Bellergall and Sansert worked, but were taken off the market. I believe there is a new one for Alzheimer’s that has been used off-label for migraine, but my doctor at the time did not recommend it.

• Every abortive medication available, and some no longer available: Fiorinal & Fiorinal 3, Midrin, Cafergot, Buspar, Ativan; Xanax (which worked but I can no longer get anyone to prescribe); Ultracet/ Tramadol; Indocin and IM Toradol when I could still take NSAIDS; Baclofen and Zanaflex; sinus and allergy medications; every type of “triptan,” Migranal (intranasal) & IM DHE. The most effective medicines for controlling my symptoms continue to be Imitrex 100 mg tablets and 6 mg injections, and oxycodone / acetaminophen 5/325, as well as Zanaflex and anti-nausea meds (below).

• For nausea: compazine & Reglan (could not tolerate); Zofran and Phenergan suppositories (ongoing) and OTC Dramamine.

• Lidocaine administered into each nostril while I hung my head upside down

• Steroid (Prednisone) “burst and taper” therapy

• DHE and Magnesium infusions

• TENS units (similar to the Cefaly)

• Gluten-free diet and trigger avoidance
• Many CT scans, EEGs, as well as a recent MRI and MRV

• A six week Chronic Pain workshop

• Highly-regarded Neurologists / Headache Specialists, as well as an attempt with another who refused my case

• Yoga, meditation, mindfulness and gentle exercise

• Total hysterectomy and hormone replacement

• Elimination of all medications except twice weekly Naproxen to check for medication overuse headache

• Oxygen therapy

• Extensive testing for ANA (POTS / Ehlers-Danlos / Lupus) illnesses as well as many many other tests

• Eyesight (I use special migraine glasses called Theraspecs for photophobia but vision is fine)

• Dental for TMJ (none) and teeth grinding / clenching (mouth guard discontinued)

• Daily supplements recommended for migraine such as magnesium, B2, fish oil (DHA), feverfew, and probiotics (ongoing); butterbur (discontinued due to side effects); melatonin; Vitamins D, C, & K

• “Lipigesic” brand sublingual solution with feverfew and ginger which occasionally worked but is no longer being manufactured as far as I can tell

• Pain therapy with counseling, Progressive Muscle Relaxation, Cognitive Behavior Therapy, and biofeedback (ongoing)

• Participation in a chronic migraine open label study of the developing Calcitonin Gene-Related Peptide preventative medications at a world-renowned institute (ongoing) ~ contact: A.S.

• Successful treatment for depression, insomnia, hypothyroidism, stomach lining disintegration due to lifelong NSAID use (all treated by my GP) and endometriosis / pelvic floor dysfunction (ongoing with Dr R)

• Cartilage pressure point ear piercings

• Tools such as the “IceKap,” shiatsu neck massager, Chiro-Flow water pillow, Velcro adjustable pressure head band, headache trigger trackers / diaries / apps

• Capsaicin nasal spray

• And of course the use of heat, ice, isolation in a dark, quiet room; non-NSAID OTC medications when appropriate; constant hydration, topical gels and patches containing menthol and camphor; peppermint essential oil and Epsom salts; regular sleeping and eating patterns.

In addition, I see AS at the institute every four weeks, my pain specialist Dr M every 4-8 weeks (who prescribes the traditional pain medicine mentioned above to compliment the imitrex so I am not taking only one abortive med all the time). Due to some insurance difficulties I have not seen Dr Mac (pain therapist) for some time, but I am an established patient and the biofeedback skills she has taught me are invaluable. I plan to return ASAP.

The reason I am stating all of this in a letter is because I had a very disturbing appointment with my family doctor, Dr. N.S., DO, this past Tuesday (March 1). She provides my basic care meds as well as both types of imitrex, anti-nausea medications, and the muscle relaxer Zanaflex. Expecting a routine checkup, I was completely caught off guard when she swept into the room and began what seemed to be a pre-scripted speech regarding my “misuse of the system,” “inappropriate use of the ER” which she claimed should be only for life and death situations, and then proceeded to tell me how many hundreds of thousands of dollars I have cost the health care system. As I hadn’t had an appointment with her for a while, I believe she thought I was using the ER as the basis of all my migraine care rather than trying to get to the “root” of the problem, which indicated to me she is misinformed about the very nature of migraine and certainly seemed to have forgotten our past discussions of my strong family history, diagnosis at age 9, and my many many desperate attempts at finding a cause when there is simply nothing that can be “fixed” (see extensive list above) and that the best I can hope for is maintenance, and a semblance of an attempt at a decent quality of life. I tried to remind her that I am participating in a study to help in testing the closest thing migraine disease may ever have to a “cure,” the very first preventative being developed specifically for migraine, and travel over an hour once per month to do so. At those appointments, A. collects health data through questionnaires, EKGs, vitals and blood work, daily migraine diary information, and psychological assessments as well as administering the subcutaneous injection of 70 mg (a rather low dose) of the Calcitonin Gene-Related Peptide. I saw awareness flicker in Dr S’s eyes as she remembered the significance of the study, but she quickly rebounded and stated she had not received a report from the study in over a year. I don’t believe more than the initial communication about the study was part of the protocol unless problems presented themselves, which they did when A. discovered my thyroid was too low. Dr S went on to point out that every ER discharge states to follow up with your family doctor in 2-3 days, but what I did do was report each ER visit to A. and to my Pain Management clinic. It takes 6 weeks to get in to see Dr S.

She then proceeded to call me a “frequent flyer.” It was at that point I realized that my primary care physician no longer trusted me or believed me to have chronic, debilitating migraine disease. Or worse, that she simply didn’t care.

Ironically, at my last ER visit on Friday 2/26, a kind nurse explained to me again that they can tell how much pain I’m in, and that my blood pressure and heart rate, tears and general demeanor are positive indicators that I need immediate help. She even said “We do get some frequent.. visitors… whom we can tell are not sick. You very clearly are.” This nurse, even in telling me I am NOT one, was so respectful of me that she refused to even use the very insulting “frequent flyer” terminology.

But Dr S still wasn’t finished. She went on to state that the 9 imitrex allowed per month by insurance was too many, that I shouldn’t be using more than 5 per month. Every headache specialist I’ve ever seen has allowed 4 per week, and through my support groups I know that in some special cases Triptans are prescribed for daily use. At that point she brought my children into the equation by claiming I am hurting them. “What do they think, how do you think they feel, when they see their mother visiting the hospital so often?” I replied, “My daughters know that I have chronic migraine headaches and that the hospital helps me.” When I began to cry in despair and frustration, she said “Clearly you need a psychiatrist.” I reminded her that my depression is well controlled with the Zoloft she has been prescribing and that in general, despite frequent debilitating pain, my baseline mood is that of contentment.

At the appointment, I had wanted to get referrals to an allergist and a GI specialist, still, yes, looking for more root causes and connections. My request for the referral to the allergist was ignored so I did not bother to ask about seeing a GI person. She also denied my Zanaflex refill (an ill-advised cold turkey discontinuation which was fortunately remedied by Dr. M). Update: a week later Dr S emailed the Zanaflex refill to my pharmacy. I have no idea what to think about that.

I fear that Dr S will also deny my Imitrex tablet and injection refill requests, removing a significant part of my at-home migraine care which of course would ultimately lead to more ER visits. As my supply of tablets has not yet been depleted, I don’t know whether the denial will happen or not, but I am quite concerned and frankly devastated by the whole encounter. I did receive a prescription for the preventative Corgard, with which I have a good track record except that it used to dangerously lower my BP (which is at a higher baseline than it was). I felt that I needed to attempt it again so that she would see that I am still willing to try anything for a modicum of improvement, though the referrals would have accomplished that as well. I am no longer receiving the CGRP med due to the study being in its last phase but technically I should not be taking a preventative for at least three more months so that the drug company can track the effects of discontinuation. A is going to try to get me into another study as well, when she can.

***Update #3: My Imitrex injections and tablets were allowed by Dr S, but with no additional refills on the tablets and just one on the injections. This week we should be finding out whether J got this full time job at our local university, meaning we’ll be off Medicaid, and if that happens  I will be searching for a new doctor as soon as the coverage begins. I have heard decent things about another doctor in the same practice as Dr S; a risk but better than seeing her again, if the job doesn’t happen and we remain on Medicaid. The Corgard made me too tired to continue.  It has been four weeks since my last ER visit. ***

I am going to be searching for a compassionate family doctor who understands that chronic illness, particularly the “invisible” type, has many ups and downs over a lifetime, and that I am doing the very best I can for my daughters, my husband J, and myself. No one wants to live a life of pain. No one wants to seek emergency treatment. S’s use of the term “frequent flyer,” her refusal to listen, the way she used my children against me, her insulting insinuation that I need a psychiatrist all cause me to worry that she may attempt to flag my file in a way that will cause me to be denied treatment at WC Hospital, the only ER in which I’ve felt safe, respected, and assured that the medicine and IV fluids I require at those times will be administered.

So I beseech you to please continue delivering the emergency care I occasionally require. I will be looking (with much trepidation) for a new doctor, will continue searching for new solutions, and live my life the best way I can, which is to treat my migraines as they come on rather than to live my life in bed without adequate pain relief. That is without a doubt what would hurt my young daughters the most.

I don’t know if you are technically Dr S’s supervisor, since she is affiliated with the hospital, but this is my first step in lodging a formal complaint, as I feel she may well have broken the Hippocratic Oath of “do no harm.” I would like to report it to the State as well.

A, the research nurse, will also be sending a letter on my behalf, and I am hoping to have a US Pain advocate do so as well. I would also be happy to ask the Theatre Board President, the Curator at the Museum, or the owner of the Dance Studio to write letters supporting my character if that seems like it would be helpful.

And again, I want to express my deepest appreciation for the consistently compassionate care I receive at WC Hospital, where I am treated like a human being in severe pain, not just a number with an expensive dollar sign attached. Mr K, you and your hospital are to be commended. It is not possible to overstate how much the care, concern, and loving kindness of your staff means to me.

Most Sincerely,

lady migraine

Traumatic Birth: Life After Near-Death (Updated)

They took her.

I was cut open and hastily re-stitched; paralyzed by a spinal block; bags of my own blood prepared and ready to transfuse if necessary, though apparently the physical danger to me was now over. The operating room was cold and sterile, glints of hard stainless steel, no friendly faces. My kind and efficient ob-gyn was tense and grim, the normally jovial Irish brogue of the doctor assisting her was quiet. The c-section had been unbearably uncomfortable, to put it mildly. The sensation of an anvil pressing heavily on my chest, compressing my lungs. My arms outstretched out and restrained, a flat crucifixion. An oxygen mask on my face.

They took her five weeks early. In my second trimester, I had been told after an ultrasound that I had placenta previa. My memory is hazy, but I remember not feeling all that concerned at the time. The Women’s Care practice of which I was a patient had formerly had midwives, with whom I’d worked when pregnant with X three years before. That pregnancy and birth had been “normal” if constant ER visits and hospitalizations for chronic, severe migraine can be considered normal, which of course it can’t. But X had been born beautiful and healthy after a standard, relatively short labor. Dr. B was present at the birth because neither midwife was available, and there was meconium in the fluid so X’s nose and mouth had to be immediately suctioned, but all was well. I was able to hold her and nurse her right away. All of us were in the same room together at all times. I was surrounded by family and it was a joyous occasion and my 6 pound, 7 oz perfect cherub of a baby was so pink and pretty with her dark eyes and wisps of hair. I had gone in around 9 am, and by 9 pm, my cozy and comfortable hospital room was filled with a circle of our friends from the coffee shop where we worked. They brought dandelions and chocolates. My lovely friend Megan had tears dripping down her face. There was so much love, and warmth, and joy.

So I trusted that same Women’s Care practice with my second pregnancy, and Dr. B and the other doctors there, despite the fact that the midwives had departed and were not replaced. My migraine disease responded to the increased hormones as it had before. This time Imitrex was generally considered to be safe for use during pregnancy, so I had more options for treatment, though I was often forced to seek additional help at the ER and hospital. When I was told about the placenta previa, Dr. B explained that the placenta was growing between the baby and the cervix rather than on one side, which meant that if it didn’t move up there was no chance of a natural delivery and I would have to have a c-section. I was okay with this. I was put on “light pelvic rest” which meant I shouldn’t lift anything over 20 pounds and told that I should call if there was any bleeding. I don’t think there was any particular urgency or danger implied. I was also told that my baby, which I already knew was another little girl, was breech. That news was delivered with the same tone. I walked out happy. She was doing fine. I thought, well, I have a three year old. I’m going to have to pick her up sometimes. I even thought, maybe I might prefer to have a c-section. I was conflicted about that, but I didn’t feel any trepidation or overt worry. I didn’t obsessively google placenta previa. I followed the pelvic rest instructions, usually.

The placenta did not move. Zo was growing at a steadier rate than X had in utero, and was already around 5 pounds in early Febrauary when the c-section was scheduled for March 17. I thought about buying a silly onesie that said “Baby’s First St. Patrick’s Day.” I worried a little about the c-section, but thought, how bad could it be? I liked having a certain date marked on the calendar, especially since X had been a week late. Sometimes, when going grocery shopping, I’d quickly lift little X into the cart. Despite the horrible persistent migraine pain I felt strong and immune to danger, especially the type of danger that could threaten my life or the baby’s. I should have done some research. Maybe I didn’t want to know.

Click here to read about placenta previa.

Three hours ago I woke gasping from a terrifying nightmare, probably brought on by the experience I wrote about in my last post: driving around an unfamiliar area with my daughter strapped into her booster seat behind me, blinded by level 10 pain, already having vomited, searching for a safe place to park. Zo alternating between reassuring me and plaintively asking if I was going to die. Panicking, unable to take her in my arms and calm her fears, unable to calm my own. In my dream I had lost Zo after picking her up from a strange prison-like school with many obstacles between my car and the line of children and their belongings. I had her by the hand, pink shirt and ponytails, smaller, still preschool size. And then I didn’t. I didn’t see her anywhere. And I began to scream, her name (which in actuality has three syllables) over and over, desperately. All the children had pink shirts and ponytails, but none were her, and the obstacles loomed up everywhere, and then I couldn’t breathe. I signaled frantically for all of the adults to help me, I couldn’t find my daughter, my baby, she was gone, and I couldn’t even breathe. She was gone. She was taken from me and I couldn’t keep her safe, or even myself safe, or properly communicate. My flailing hands, my pounding, terrified heart. My baby.

I pulled myself out of the dream as though surfacing through water, drowning. I took a huge breath and realized my nose was completely stuffed up when I hadn’t had a single cold symptom when falling to sleep a mere hour (I discovered) earlier. My daughter’s name was still echoing in my head, the tearing, shattering sense of loss, and I ripped the blankets away to find my six year old Zo sleeping soundly, her light brown bob framing her perfect face, hands tucked under one cheek the way she has always slept since she was born. She likes to sleep with us and often crawls into our bed in the middle of the night. She was right there, safe and breathing deeply.

Talking to J soon afterward, in tears, I realized that the experience at the airport had taken me back to my fear and helplessness and injury at Zo’s traumatic birth.

 

On Friday, February 13, 2009, X and I were with friends at a crazy bounce house filled building called Monkey Jump. Had I lifted X there, too? Maybe. The warehouse sized room was filled with screaming, careening, children in socks and their weary parents. I wasn’t feeling great. Not with migraine, but with more fatigue than usual, and something else. X had had a good time. Did I take her to my parents’ afterward? Because I think I was home alone when I felt something strange, an internal twang, which compelled me to head for the bathroom though I didn’t have to pee. And there, I found blood. Not spotting, but blood that dripped and puddled on the tile floor. “Call us if you have any bleeding.” Okay. On auto-pilot I sent J a text that I was bleeding, probably the placenta previa, and that I was going to call the doctor as I’d been instructed. When I did so, I was surprised at the response. Even at the sight of the blood, I hadn’t felt particularly alarmed at first (though perhaps I had gone into shock; these particular memories are very clear). This possibility had been handled so casually. Not “you could bleed out,” or “bleeding would indicate the placenta rupturing.” Certainly not, “you could die.” But my call and the news I delivered was handled like a dire emergency. And I did have an awareness of the bleeding… not stopping. Which couldn’t be right. Is this what they had meant all along by “bleeding”? I hadn’t imagined anything like this near deluge. Drips, spots, I’d thought. Were there varying ways you could bleed from placenta previa? I realized I knew almost nothing about what it truly meant to have the placenta pressing against the cervix during pregnancy.

I changed and dug up a large menstrual pad. I lay down and waited for J to come home early from work and take me to the emergency room, which is what we had been urgently instructed to do on the phone. I was surprised and beginning to get very scared, and angry with myself, and angry with Dr. B. Why had I not been made aware that the bleeding which could occur would be a sizable quantity? That I would have to immediately report to the hospital? “Call us” to me meant I could have some spotting and would need to make an appointment and probably stay in bed after that for the remainder of the pregnancy. That is what I’d thought, what the casual tone and lack of explanation had led me to believe, or allowed me to think. Instead it was an emergency, and the hospital, and bleeding which wasn’t stopping. It didn’t hurt. My baby was just over 5 pounds and I was at 34 weeks gestation. We hadn’t prepared the nursery yet, had no bedding, no supplies, though that didn’t even strike me yet as a problem because I was 5 and a half weeks away from surgery, right?

We went to the hospital, where they were waiting for us. I was hastened to a wheelchair and whisked to a comfortable ER room with more equipment than usual. Again, my memory is hazy here, but I was laid flat and hooked up to monitors, where it was determined that I was having contractions. Labor would have to be halted. The bleeding had to be stopped. I wasn’t going to be leaving the hospital. I sent a text to my friend Leah, at work, and asked her to pray for me. I don’t believe in a God that answers prayers but I wanted all the help I could summon. I was terrified.

Of course I know now that placenta previa is an extremely dangerous condition which can cause placental abruption, severe blood loss from hemorrhage, early delivery, congenital malformations, and even death for both mother and baby. I was told none of this. Perhaps my migraine situation had been considered, and my stress level. But what you don’t know can hurt you. And I still believe that it was carelessness and not its opposite which caused my lack of education. In 2009 I was not yet blogging about migraine, advocating for myself, and accepting that I would be chronically ill forever. Now all that has changed. Now I would never accept a diagnosis without asking a lot of very specific questions and doing my own research, as my trust in doctors has been betrayed too many times. This change in my attitude about illness and taking charge of my own body and health was partially because of the trauma of that weekend, one of the most important of my life, Friday the 13th through Valentine’s Day to President’s Day 2009.

I was given medications and admitted to a dark, quiet corner of the maternity floor. The labor and bleeding were stopped, but I was on strict bedrest and barely allowed to move. A catheter was inserted and in order to relieve myself “the other way,” which they needed me to do, I had to use a bedpan while lying down with a nurse present in case the placenta ruptured in the process. It was the most humiliating experience of my life. I couldn’t and didn’t want to see any humor in it. I will never forget the kindness of that nurse and the bond I felt with her, though I no longer remember her name. Years later, she walked into my place of employment and I burst into tears before I even knew why. At least, that day, I was able to tell her what her care of me during some of my darkest days had meant.

**(Update)** Since first publishing this post, my mom has filled in some of the gaps in my memory. Those are added in asterisks. 

J and X visited. They brought me Valentine’s Day gifts. The debate began about Zo and whether to keep her “safe” in the womb or to deliver her by emergency c-section immediately to minimize the risk to me. Dr. B had always seemed laid back and was often laughing, so her seriousness and grim demeanor when she would examine and discuss the situation with me were even harder to miss. I was at huge risk. The baby was at huge risk. **The nurses referred to me as a “ticking time bomb.** And Dr. B also didn’t seem surprised that it had occurred. If it was so likely, why wasn’t I told? Why wasn’t it explained that lifting my daughter could actually quite literally kill me instead of simply coming across casually as “not recommended”?

Fortunately Zo was 5 pounds, 5 ounces. I had a special ultrasound which revealed more details and that was truly a joyous moment within the constant terror. I saw her wiggling on the screen, head still down, but healthy, with well developed lungs (I don’t remember whether they used steroids to try to develop them further but it seems like they did). **She did not need steroids, and the ultrasound showed she was taking “practice breaths,” a stage of in utero development indicating fully developed lungs.** It was decided that she could be safely delivered but they wanted to wait as long as possible, and as long as possible turned out to be Monday. I would be exactly 35 weeks gestation, making her “pre-term” instead of “premature.”  So I lay flat on my back and waited, terrified and uncomfortable. I did have one more small bleed which convinced the team even more that she needed to come out of there. Dr. B explained that the c-section would be dangerous because just a tiny flick of the scalpel to the placenta could cause me to hemorrhage. The blood was prepared. Another doctor from the practice would be assisting, a pediatrician on hand, a life flight to a Toledo neonatal unit lurking nearby. They seemed far more worried about me than the baby. I think J felt the same way.

I was wheeled to the operating room. J would be joining me immediately before they began. I was so cold. The anesthesiologist was not kind, although I can’t remember in what way; I just remember being nearly naked and shivering as the spinal block was administered to numb me completely from the middle of my back down. I was laid on my back and strapped down. The sheet was dropped in front of my face to block my view as the bustling, tense doctors and nurses prepared.  I had had surgeries and lots of medical experience and had assumed a c-section would not be horrible, but nothing prepared me for this experience. Something about the spinal block caused me to feel a huge weight on my chest and I felt I couldn’t breathe. Tears streamed down my face and puddled on the table underneath my head. J came in, dressed in scrubs. “Help me” I whispered. “I can’t breathe.” An oxygen mask was procured and I still felt the blind panic. I asked for anti-anxiety medication and I felt no change after it was administered into the IV. J was behind me.

Surgery began. I heard soft urgent voices and felt more pressure. I knew they had lifted my uterus out and were trying to remove the baby from it without touching the dangerously connected and positioned placenta. She was out. One part of the team whisked her quickly across the room. There was no noise. The doctors were still urgently and carefully removing, replacing, stitching, but the baby. Where. Why. The troublesome placenta splashed harmlessly into a metal basin. I tried to lift my head to see around the sheet and saw brief glimpses of a tiny and gray creature who made no sound. She wasn’t THAT early. Over five pounds. Why wasn’t she crying. The frantic figures in blue took my blue baby away and she was gone.

They took her.

J was given the choice to stay with me or go with the baby. I remember urging him to go. I remember someone saying “It will be okay” and believing them because I had no choice. All I knew is that they hadn’t even shown her to me. I hadn’t heard her cry, and from my pinned down, blocked vantage point she hadn’t looked good.

Mom was with me. I remember thinking she didn’t seem panicky. I remember her being more nervous about the meconium staining at X’s birth. I was wheeled back down the hallway. The tiny, ill-equipped neo-natal room was to the left, where J and the baby were. I strained to see through the blinds blocking the windows. I still couldn’t really move. Terror but then inescapable grogginess. I had been stripped bare and ripped open, quickly put back together, but felt my heart was outside my body and it had stopped beating. Back in my comfortable new recovery room the darkness descended and, mercifully, I was out.  **This is only a trick of my self-protective mind. Mom says I never lost consciousness. I was hysterical.**

J’s account of his time with Zo plays in my head like a movie I can’t quite see. I imagine it with beams of light shining from – where? and the nurses like loving angels. All I experienced was a seemingly dead baby being taken away. J saw her struggle to survive, her fight and will to live, and the care of those professionals who had seemed so cold and faceless to me in the operating room.

Immediately Zo was placed under an oxygen hood. Wires attached, IV lines inserted, with little response from a tiny blue baby with no fat on her body to protect her. I believe that the air ambulance techs were rushing inside with their equipment, preparing to rush her to a better equipped facility to the north. J, stunned and horrified, willing his miniature second daughter to breathe, just breathe. I feel like they allowed him to touch her but I’m not sure, and he was so traumatized by the whole experience that I’m not going to ask him right now to re-live it.

“Breathe. Just breathe. You can do it. Breathe.” Talking to her, willing her, knowing it might be no use. Maybe only a minute went by from her removal from the operating room to her placement under the hood and the gasp and flutter as she fought to the surface of her harsh new environment, and while the nurses worked, opened her mouth and inhaled. And without extreme measures, before the reserves arrived, just a little extra help and pressure from the hood and she did it on her own. My baby lived.

J describes the response in the room as a huge burst of joy and near disbelief. Her quick rallying was unexpected. She wasn’t able to cry for some time. Even the poking and prodding, needles and tubes and wires and probes didn’t provoke wailing and protest, but she breathed. She breathed. J sobbed, the nurses laughed, and they did something unprecedented for lawsuit-weary and wary hospitals: they allowed J to take a video of Zo’s first live moments with a small video recorder he’d had in his pocket. They were calling her tough, so strong, a miracle baby. Born blue, then breathing on her own.

  
The first time Zo cried was when they bathed her.

J brought me the video before they could allow me to see her. He stood next to my bed in tears, and was able to show me the miracle of a breathing baby. She was okay, and I had no awareness of the death and fear and rebirth J had experienced before he began recording; I only had the sensation of that awful operating room and the lack of a baby’s expected cry which had settled into my soul and would never leave. J removed the paper cap which he’d been told to place over his hair. His dark curls had turned about 15% gray since before putting the cap on. He says that as soon as he took the cap off I gasped “Your hair! It turned white!” He was 28 years old. I was 35, and appeared far younger. I date my own more rapid aging to that day as well. We would never be the same.

Holding her for the first time was transformative. I don’t remember how soon she was able to stay in my room with me, but it didn’t take long. **Mom says I got to see her around 2:00 pm (the c-section was at 8).** Her heart and oxygen monitors never sounded alarms other than to indicate disconnected or twisted wires. I was able to nurse and my amazing lactation consultant helped me to pump extra milk in order to supplement her feeding without the use of formula. She would latch, and I would insert a tiny tube into her mouth as well. The fact that we were able to do this was another amazement to the doctors and nurses, who fully thought Zo would refuse to nurse or be unable to demonstrate a sucking reflex.

  
My young and pretty family doctor, who was struggling with her own chronic illness which would soon cause her to retire from medicine, came to examine us and kept blinking in disbelief. “You can go home,” she said, astonished. “You don’t even need to take a heart monitor with you. Neither of you needs to spend any additional time in the hospital. She’s fine. You’re fine.”

But J and I weren’t really fine. We were joyful and relieved, but damaged.

And the trauma of the recent day when I was again helpless and unable to protect Zo brought all of this back to me in the guise of a terrifying nightmare. But I was able to wake, and see her there sleeping, my strong, tough, spirited miracle child, and I decided to purge myself of the experience in writing for the first time. 

They took her away from me and I couldn’t look at her face or follow or even move. But she lived. And so did I. 

**In talking with other traumatic birth survivors, including a good friend with the same doctor / hospital whose experience seems even worse than mine, I have learned it is fairly common for c-section babies, especially pre-term ones, to not breathe/ cry because their lungs don’t get exercised while being pushed down the birth canal. Therefore, no matter how it seemed to J and me, and no matter how relieved and happy the nurses were, my 5 lb, 35 week baby was no “miracle,” just a slightly worrisome statistic and one who happened to rebound really well. But I was catastrophically under-informed. I should have been told there was a chance she wouldn’t cry and that I wouldn’t be able to see her right away. I certainly should have been told more about the placenta previa and the danger I was in. In any case, this is my experience as I remember it. And Zo will always be my miracle child. 

  

Hello, It’s Me (Part 2)

So there we were, me hauling costumes and my purse; Zo with her book bag on her back and pulling the supplies bag behind her like a caboose. A wave of sick heat rolled over me, with that horrible certainty as your stomach contents rise toward your throat. “Zo, I’m going to throw up.”

And I ran. I tore around the corner toward the glass exit door, pushed it  open, and swung my upper body toward the mulch and spindly December bushes to the right of the sidewalk as I tried to aim over the priceless, irreplaceable costumes I was holding. It all poured out of me in a rush. Gasping relief. A bystander pretending not to see me. A little splash back onto the garment bag but all in all, a nice save. Zo’s white face behind the glass.

“Okay honey, it’s okay.”

“Do you feel better now, Mama?” Hope, desperation in her tremulous voice.

I had looked Mindy,* mom of Zo’s best dance buddy (and a boy! boys dance too!), in the eye and told her I wouldn’t drive if I realized I wasn’t safe. I was starting to have my doubts.

I sent J a text. “I puked.” What to do. The airport conference building where we were was in the middle of nowhere, 40 miles from home. I had noticed we were close to one of our favorite area metroparks… maybe I could make it there. I called J and said I did need him to come get me, that I’d meet him at the park. 

But when it was time to turn out onto the road I knew driving was a mistake. Cognitively, I would have  as much chance of finding the park again as Zo would, and iPhone Maps Lady’s calm mechanical voice was not helping, she might as well have been the teacher in Peanuts specials. “In 3.2 miles, wah woah wah wah wahhhhhhh.” Having no idea where I was going, I turned down another road adjacent to the airport. I saw six large dumpsters in sort of a pull-off parking area, so I drove into it. I think my plan was to try to figure out how to get to the park. Zo started crying. My memory is hazy here, but I think I realized I needed to just find a safe place and stay there, and as a truck pulled into the dumpster area I decided that would not be the place.

I tried to reassure Zo and drove slowly to the main airport, the closest and only landmark. I said, “We’ll wait here for Daddy.” She replied in a shaky voice “can he come really fast?”

Fortunately the huge parking lot was nearly empty, but it seemed like a maze, never ending curves of road with no access to actual parking spaces. I thought I had found a way in, then saw there was one of those parking gates in the down / closed position and a sign which read “Employees Only.” At that I made a sound somewhere between a bark, a laugh, a moan, and a sob and Zo said “Mommy! Are you dying?”

I had to reverse and drive backward out of the curve. I got turned around and as Zo cried tears of pure panic and I whimpered and talked to myself, I drove around trying to find  a parking area I was able to enter. It occurred to me that in a few more minutes, I would need to just stop, put on my hazard lights, and call 911.

But there, an opening. “Rental Car Return.” I pulled into a spot, opened my door for a breeze, and called J again that I was at the airport. He was on his way, with his mom so that he wouldn’t have to leave his car.

While we waited, I tried to reassure Zo. We’d never let the girls see me so  sick, so she didn’t realize this was still “just” migraine. I tried to explain and she said “Okay that makes me feel better.” I fought to remain conscious, my burning forehead in my hands, elbows on knees, bare feet on the asphalt. Zo’s little hand patting my hair from behind, her terrified, feeble suggestions. “Think happy thoughts, mama.”  “What if you play your game on your phone?”  “Do you want me to find you a show on my iPad?” “Can daddy tell the police he needs to drive really fast?” And, every now and then, the plaintive repetition of “Are you dying?” 

All I wanted to do was hold her in my arms and tell her it would be all right. But at a 9 or 10 pain level, I could barely speak or move. When I did use my voice, my lips felt numb, and my words were slurred. “Everything is going to be all right. You are safe. Daddy will be here any minute. You are so brave and I am proud of you. I’m not dying… I have a migraine.” Her hand on my head.

When my mother in law’s SUV roared up, it was like the parting of the waters. I realized I had been afraid I would never be found, that I’d slipped into a circle of hell or a Murakami-esque parallel universe. Joy and relief radiated from Zo as she launched herself out of her booster seat. J’s mom took both girls with her, and I let go completely and gave in to my pain and fear as J shifted me over to the passenger side and drove us toward home.

I decided to not go straight to the ER, though with a vomiting level 10 I knew I’d end up there. All I wanted was my bed. J was truly a knight in shining armor as he got me upstairs with my “Icekap” migraine hat, a basin, and pills mashed into powder and mixed into applesauce. Dark, quiet cloud. He called in my imitrex injection refill and went to pick it up. I went all the way out.

Two injections and one serious nightmare (about having a severe migraine while juggling responsibilities) later, I told J it was time to go. I’d just been in the ER two weeks prior, but I was out of options. J dropped me off at the door and I shuffled inside, wrapped in the Frozen fleece I always bring.

And, that is pretty much the end of the story, a terrifying migraine experience that ranks near the top of worst case scenarios. I could describe the ER, and in fact the handsome young doctor did ask more questions and seemed less inclined to give me the meds I need than anyone else this past year, but I did end up receiving the requested fluids, zofran, and dilaudid. As the nurse started my IV she said, “We can always tell when it’s the real deal. Makeup and hair done? Migraine my ass,” she extrapolated. “Sorry about the language.” I assured her it was fine, and wanted to say that drug seekers piss me off too, given that they cast an umbrella of suspicion on all of us, but still couldn’t really communicate. I’m sure that, along with my high blood pressure, didn’t hurt in their determination of whether I was really in pain.

The saline bolus burst through my parched veins and carried the dilaudid on little cat feet from my chest, through my arms, and up into my burning brain. The rush, the relief, tension and fear draining, the cacophany of the hospital (a raspy never ending cough, a baby screaming, machinery beeping, carts rolling) fading away, pain fog replaced by a soft blanket of well being.

I left at a 4, but a calm 4. There were more medicines at home, and my own bed in my safe space. Right now, a day later, low levels of pain still come and go. J and X took Zo to her Nutcracker performance. I’m not going to die, it’s “just” a migraine… and, with a little help from my friends, life goes on.

*names changed to protect innocent dance moms   

Hello, It’s Me

Today was the kind of day that inspires a return to blogging after a long hiatus. A day when new friends; your rapidly maturing children; and your caregiver/ partner all show how supportive, kind, and brave they can be on your behalf. And most of all, one of those days where you end up feeling surprised by your own resilience and strength.

In 40 years of severe migraine, today was one of the scariest incidents I’ve ever experienced. The headache (a severe stabbing fast-burner, double-sided and expansively spreading), mostly vanquished the day before, crashed back down upon me like a tsunami. Almost 70 degrees in mid December, taking antibiotics for a sinus infection, the hot, windowless, crowded conditions of our Nutcracker green room today were unbearable for me in my fragile recovery. (Zo has several roles this year in our dance studio’s annual production. It is time consuming and rewarding in the best way.) Once the pain topped 4, I had to make the decision to get Isobel out of there early. Sticky with sweat and seeing spots, my skin crawling, I asked a few of the “Nutty moms” sharing  backstage space with us for help finding a convenient exit and packing up. Everyone was kind, concerned, and  efficient. Then I threw up. 

To be continued…