Dear Hospital CEO: a letter finally sent

Last year on March 1, I had an unexpected and devastating visit with the DO who had taken over as my primary care physician. She had done a lot for me: set up my first mammogram, referred me to an amazing pain specialist, and while I was in a CGRP study prescribed the other migraine meds I would need. I was completely blindsided when she began attacking me that day about using the ER and I left in furious tears. When I was finally calm enough, I wrote a blog entry / letter to the hospital (at which I was and am always treated extremely well) called “Dear Emergency Room” (addressed to the CEO of the hospital) in which I poured out all my agony and grief at the confrontation and explained why emergency care had become part of my migraine protocol.

I realized right away I could never send it. It was a perfect blog post, but way too emotional and long to be used as communication with someone whose help I was going to keep desperately needing. I did ask A, the study coordinator, to write the hospital a letter on my behalf, especially to state that I always reported my ER visits to her, since that was one of Dr. S’s main points, she claimed, that I didn’t follow up with her each time.

Since it took me so long to be insured and am still struggling with that issue, I never did file a complaint about Dr. S. When I finally made an appointment with a new family doctor, that didn’t go too well either. He made me feel uncomfortable and asked for details about why I left my former doctor. I feel like I am trapped as I can’t keep making appointments with new doctors until I find a good one.

Anyway, after my recent hospitalization I planned to write the hospital CEO a different letter (email), to express my appreciation for one of the nurses I’d had. It was nice because some of the other things I wanted him to know and had stated in the previous letter, I was able to express, finally.

Here is the letter.  Some names have been obscured for privacy / non-disclosure purposes.

Dear Mr. K,

Hello! You may not remember me – we aren’t well-acquainted, but I used to work at the Community Center and I have a daughter who has danced in the Nutcracker with your daughter since 2014, and we have greeted each other at both places. My name is Elizabeth, and I have chronic migraine disease. I am a featured writer / patient advocate on migraine.com, so as I experience issues regarding my health I often begin writing about them in my head as they are happening. There is a very long narrative of how I got from my first ER visit Wednesday after a week of severe pain to being admitted, but the part I want to share with you is regarding the amazing nurse I had Thursday night on the second floor, Sheryl.

Since 2014 I have been involved in clinical trials for the new CGRP antagonist medications through Amgen and Xxxx. I have been doing everything I can to control my pain at home, but frequent ER visits have been necessary, and the staff at WCH have almost always treated me with the utmost respect, concern, and care despite national confusion over how to treat chronic pain. The doctor I felt had the most trouble understanding my situation, Dr. “Black”, is actually the doctor who admitted me early Thursday morning. I hadn’t seen him in a long time and he was very kind, and when the treatments we tried at that second visit within 24 hours only lowered my pain from a 10 to an 8 and I was still vomiting, it was decided to admit me. I was so grateful that he was willing to do that.

At that point, I was in a nearly-empty ER and when I was moved upstairs, I was the only one in the hall. I was in a tremendous amount of pain, and the nurses who registered me were that perfect combination of kind and efficient. I was brought an eye mask, ear plugs, and an ice bag and they made sure I was given more medication as soon as it was possible. Soon there was a huge influx of patients as the hall filled up. Nurses were running everywhere, I didn’t see my doctor again as expected, meds were late, and other nurses were called in to work as the “other wing” was opened up (I learned later). Even then, the current RN, Sarah, remained kind and calm and when I wasn’t able to be seen to right away with IV or pain issues I knew it wasn’t her fault.

The nurse I had in the overnight hours from Thursday to Friday morning, however, seemed to have almost super-human powers. Her name is Sheryl Xxxxx. I was still in a lot of pain, but had moments of clarity when I became aware that though I had seen Dr. Mxxxxx once and the hospitalist, Dr. Dxxx, once (who said he’d never met anyone with migraines as severe as mine), there was no plan in place that I knew of to get me home. Without my asking her, Sheryl, as busy as the floor was, began working behind the scenes. She learned that my medications from home hadn’t been ordered and that Dr. Dxxx had left, so she asked a PA to order those so they would be in place. She also had it approved that I could be given another Imitrex injection so that I would be receiving something other than the regular pain and anti-nausea medication for migraine, which was exactly what I needed and hadn’t yet been able to discuss with anyone. (Getting rid of an intractable migraine for me is like getting rid of a tree, and both the roots and leaves need attended to. Imitrex would work on the roots, and pain medication, the leaves.) I don’t think she knew that precisely, but her thorough attention to my records and other prescriptions meant that the building blocks for my improvement and release were in place.

Meanwhile the IV I had been given in the ER was pressed against a valve in the vein and was in the crook of my arm, so my IV machine was constantly beeping angrily which was extremely detrimental to lowering of pain (sudden loud noise). Sheryl re-wrapped and taped it a couple of times, and also examined veins lower in my arms to see if she thought a new IV could successfully be started. She determined she didn’t think it would be a good idea to start a new one because I was still dehydrated, and I appreciated her honesty and attention to those details and my comfort. So she re-wrapped and re-taped again.

My worst moment was waking up in the dead of night somehow soaking wet because apparently I had drooled or something all over my hospital gown. My arm hurt and when I looked down my hand and lower arm were grotesquely swollen and I basically started to freak out. I was gross and confused and still in pain and I paged the nurse crying, asking for Sheryl specifically because she knew exactly what was going on with my arm. When she walked in, I apologized and I think called myself her “freak patient,” and she made me feel immediately like everything was going to be fine. She peeled off the gross hospital gown and helped me get on a new one, and admitted my hand looked pretty awful, but said, “You know, I think it’s just because of how tightly it was wrapped.” She unwrapped and untaped it again, re-did it looser and propped my arm up differently so all the blood wasn’t going to my hand. She saved that bad IV over and over, while making me feel somehow NOT ridiculous. I was able to doze off again, and the next thing I knew she was back with pain meds because it was time and she knew I’d had to wait a long time twice the day before. Once more, she delivered meds on time and my pain for the first time edged below 5. I had begun having withdrawal effects from my Zoloft because I’d been too ill for several days to take it at home, so the fact that she had arranged for me to have it that morning felt miraculous, as did the fact that I would soon have another Imitrex injection coming.

When Dr. Dxxx returned in the morning, it was because of Sheryl’s hard work on my behalf, before I could even properly advocate for myself, that I was in good enough shape to talk to him in a more coherent way. He told me he’d meant to have me receive another Imitrex injection the night before as well, but that hadn’t been communicated. He said that he would prescribe another IV treatment of Decadron (I’d had one dose in the ER) with the Imitrex, and with those delivered together my pain went down to zero and I was able to be discharged late that afternoon.

Sheryl’s treatment of me during that hectic (for her), scary gross and painful (for me) dead of night time was so above and beyond what was required of her. I was probably a very low patient on the totem pole of needs, yet she never made me feel I was taking up her time with my weird IV situation and invisible head pain. She was efficient and reassuring, and made sure I was comfortable. In my 30 years of being chronically ill, I have had to deal with countless nurses and doctors and lots of different kinds of medical professionals in myriad situations. Sheryl is the best nurse I have ever had. I hope that somehow she can be recognized for her excellent care, because I can’t be the only patient she’s positively affected both by paying attention to detail and being extremely kind. Sometimes a nurse will be good at one of those but not both at the same time, and Sheryl really was.

That said, every staff person in the ER and hospital I worked with from Wednesday through Friday was caring and respectful. I think that it is tempting to judge a hospital by its cancer treatment, or surgical center; but I think a better baseline to use would be how it treats its chronic pain patients. I deeply appreciate that whenever I come to Wxxx County Hospital, I know I am going to be treated like a human being in pain who is worthy of kindness and care.

Sincerely,

elizabeth

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Flashback Friday

I stayed in bed all morning. Yesterday I had to give myself a Sumatriptan injection first thing; the morning before I’d needed to take a tablet. No migraine this morning, but maybe postdrome. In a sort of desultory way I scrolled through Facebook. I don’t always check my “On This Day” memories, but I did, even going so far as to read the blog post that came up because I remember it being significant.

When I went downstairs, I had a very uneasy, not-quite-anxious, not-quite-depressed feeling, an ache below the rib cage that made me feel helpless and vulnerable. My depression has been very well controlled lately, so I felt like I needed to figure out the source of this. Postdrome? Trump angst?

I finally realized maybe it was from reading the blog entry.

It was titled “WWED: What Would Elizabeth Do?” and was about the fact that I didn’t like who I’d become in the year since quitting my job and in fact barely knew myself. At the time I wrote it three years ago, Dr P had only recently dumped me as a patient after I bared my soul to him. I hadn’t yet seen anyone in my neurologist’s office, so I was without medication. It was before my first CGRP trial, before Dr Mac and Dr Mitzi, right when I decided to taper off Cymbalta, before John got his social work job. It was probably one of the lowest points of my life.

In the entry I described my crazy, desperate run through the hospital parking lot after Dr P so ruthlessly attacked me. I’d forgotten that I’d been sobbing, tore away from J and  fell, scraping my hands and knees. Reading the descriptive prose I vividly remembered how worthless and hopeless I’d felt, and scared I had been. It’s hard to explain how much being rejected or misunderstood by a doctor feels like the end of the fucking world for someone with a chronic illness. I had literally nowhere to turn.

That helpless, hopeless feeling today morphed into an uneasy vulnerability. While I am much happier and more fulfilled now, with new friends, new activities, new jobs, I am unfortunately at a bit of a crossroads again with my medical care. J has a fantastic job now at our local state university, as a full time instructor, which is another reason for my increased satisfaction now as opposed to three years ago. However, one of the most attractive features of a good job, for me, is the health insurance. I had been on Ohio’s expanded Medicaid, which was life-saving, but limiting, so I was excited to be on regular private insurance again and am particularly grateful for it now that the NOTUS is trying to repeal all aspects of the ACA.

But there was a paperwork issue. J filled out all the many many pages required for our family to be covered, and it all went through fine. What he didn’t know is that almost immediately, he would have to fill out yet another spousal form for 2017, as he will have to every year. He was behind on checking emails, falling into the “ignorance is bliss” ravine that so many of us do when overwhelmed.

On January 1, my coverage ended. I haven’t had insurance since then. J is trying to get it worked out, but because the open enrollment period had ended, now the HR people need my Disability paperwork, my Medicaid and Medicare paperwork. Which J found and gave to them. And then he didn’t hear anything. He had to go to his dean for help in speeding it up. This week, he still hasn’t heard anything new about the progress. Bills are piling up. The uncertainty of not having coverage constantly makes me feel on edge. Scared.

I finally have an appointment with a new family doctor in March, Dr. C. My spoonie friend Julie, who is local, found him first, having read reviews that he’s excellent with complicated cases. But again, uncertainty. Fear. My wonderful, sweet pain specialist, Dr. Mitzi, who refused to conduct pill counts and seemed so concerned with me personally, has apparently caved in to the federal pressure and taken an extended leave of absence. She does have a nurse practitioner, Judy, but she is considerably less warm and makes me very nervous. They are trying to find a replacement for Mitzi, but I have read enough horror stories from people in my support groups that I know it’s a possibility the new doctor will be a strict asshole who will not want to keep prescribing to me. Uncertainty. Fear.

But. The pain clinic isn’t closing, and Dr. C seems very promising. Even without insurance, if worse comes to worse, I can pay cash. Things with Dr. M (the neuro) are going okay. I haven’t had to go to the ER for six weeks. J is doing well, the girls are doing well. I have my work for migraine.com, which is a dream come true, and BG Independent News, which is so great I would never have fathomed my involvement in such a thing. Working with journalists I’ve always admired, in a field I chose for myself twenty years ago. Lucky. I’m lucky.

I have to let this false fear wash away. I have so much that is good right now.

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My girls on top of the Cape May lighthouse. X, Zo, & K, June 2014

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The cast of The Best Christmas Pageant Ever, December 2014

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Zo & me after her first Nutcracker performance weekend, Dec 2014

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Me at the Historical Center, where I frequently volunteered from 2014-2016

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Part of our theatre family. I’ve been on the advisory board since early 2015.

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Me & J at the Chamber of Commerce dinner with BGIN last month

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My migraine.com profile. I will be going to a conference in Philadelphia in March!

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. 

  

Migraine365 & Dr. Mitzi

My appointment today with Dr. Mitzi went very well. I explained that my headaches had improved in severity but not frequency, and that I’ve been having a lot of trouble with anxiety. She said she doesn’t often prescribe benzodiazepines, but that she would for me. I told her that I see a pain therapist twice per month and that things are just very stressful right now, and she seemed receptive. She asked if I’d tried Klonopin, and I said no. She actually ended up giving me both Xanax and Klonopin. The Xanax as needed during the day (it doesn’t make me sleepy) and the Klonopin every night for more longer-acting help. I told her I wanted to decrease my Percocet, so she did, and made it clear that a few months was all I’d get of the anxiety meds, but I was really really pleased.

Here is a screen capture from http://www.migraine365.com. J is working on improving the appearance of some of the originals so they’re clearer.



Also don’t forget The Migraine Diaries on Kindle! #1 available now for $2.99 

http://amzn.to/1zdORtr

#2: Election Day [2008] available March 17.

Thanks for your continued support!

~elizabeth



My Body’s Betrayal – a prose poem

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“I have no idea what I’m talking about / I am trapped in this body and can’t get out” 
— Thom Yorke

An empty husk, sunk into a permanent hollow in the flannel sheet and mattress
A mattress that used to be his mother’s
Everything here used to belong to someone else,
myself included.
Perhaps not the children, as when I gazed into the sky in my youth, I knew them. 
John too.
But certainly the beds, tables, dressers, couches. 
Even my migraine disease was bequeathed.

In my bedroom Treehouse Retreat
the fan is always whirring,
an open window lets in a little breeze, 
scent of the outside world.
My stack of books, zipper case of meds, tissues and trash, lipgloss and lotion, my phone and iPad, pen and paper.
The special prayer shawl made by a lovely group of ladies at the church where my agnostic parents have provided organ and hymns for 35 years.
Beautiful notes and pictures from the girls; poems from John, taped to the walls.
Framed wedding and birth photos, the sign I took with me when Waldenbooks closed, proclaiming “I will start fresh”
My sanctuary but also my prison of pain and isolation.

Downstairs the thumping, squealing delight of my precious daughters
the clicking prance of the dog, John’s quiet laughter, “Hey, hello,” and
“Hi Ding-doggie, you wanna go out, you need to go out? Yes.”
Loud, exuberant welcome home celebrations
I cannot be part of with my current neuronal sensitivity.

J is tired, day 3 of his new job is completed, and he has much to do.
I am tired, having been alone for many hours,
dozing my pain away under a feather blanket
for the second day in a row.
Pain that right now is unusual, not too severe, but soul crushing.
It never stops. It is immune to my one choice of pill,
the tricky “triptan” Imitrex.

I will be with the girls
while J reads through
his new work policies.
I will check the homework
select the next “My Little Pony” on Netflix, fetch snacks, push pajamas, brush teeth
but not really see them, a robot going through motions.

The pain settles behind my eyes
my movements delayed
my throbbing brain still slowly trying to process why, this time, and what I should do.
I lost my headache doctor.
My neurologist will allow me only one abortive med at home which I am to take only twice per week despite my daily headaches. 
I called for help last week and she wouldn’t prescribe anything else. 
I have been to the ER 3 times
since Dr. T’s decision on Feb 18
and once went to a Ready Care.
Feeling desperate I tried some new supplements which might have made me worse.

Because the truth is that the transition from chronic daily migraine to twice weekly episodic could take years.
Or be not a realistic goal at all.
And without being allowed different medications, I’m going to be constantly rebounding on Imitrex
and be back, back, and back to the ER.
So yes, I think, a pain clinic next Tuesday.
If I make it that long.

Not a burden on my loved ones though, never that, except someone always has to take me to the hospital or take care of the kids
and today once again no housework was completed.
My face is flushed, my nose huge,
my eyes don’t want to open,
and with this cool blue bead wrap velcroed around my head
I look and feel ridiculous. 
Pale and gaunt in a huge tee and J’s gray fleece pajama pants.
I don’t know what to do and have nowhere to turn. 

And now I am lying down again,
eyes mercifully relaxed, counting my focused breaths, but distracted
by the fact that J insisted I come back up here, to rest
to let him handle it.
A burden? Yes.
Tonight J will, once again,
have to do it all.
And tomorrow my parents will
be with my 8 and 5 year old,
taking them to school, picking them up, while I curl around the pain
into the hollow of this bed-space
I’ve made my own,
in my silent, seemingly sophistic
separate country,
this safe and sad prison,
my betraying body’s sanctuary.

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Serotonin Stockholm Syndrome

For those of us struggling every day with chronic invisible illness, one of the most discouraging feelings is realizing that someone may not believe the pain we’re suffering. It might be the careless observation of an acquaintance (“But you don’t look sick”); the frustrated words of a well-meaning friend (“You’ve tried so many medicines and NONE of them work?”); or someone on Facebook who links info about the newly-approved Cefaly neurostim machine on your timeline with the assumption you’ll now be cured. But when this minimization of pain feels the worst, at least for me, is when it is your own doctor who seems to not take you seriously.

I felt extremely lucky, recently, to get a timely appointment with my neurologist, due to a cancelation, which I wrote about in my previous post. I had been dumped by my PCP who had been prescribing my meds and was in a tight spot. I was realizing maybe I relied too much on pain medicine to get me through tough times, or even not so tough times, setting me up for bad rebound patterns. Dr. T agreed and did not prescribe any more pain medicine or benzodiazepines, saying I’d come a long way. Treat only twice per week, she said, with Imitrex. Yes, I suffer daily headaches, but by going to this Headache Workshop and that Pain Therapist / Biofeedback Practitioner I could maybe work my way down to two treated headaches per week. In spite of no longer being able to hold a job, and having recently been determined to be disabled by the government because of the intractable nature of my disease, I still wanted to believe.

On my way home that day, studying my print-out from the appointment, I saw with relief that Dr T had left the medications in question as “current” on my file. I assumed that meant if I was in a bind I could still use those meds occasionally, and with that flexibility I felt even more that this plan was something I could do. Relaxation, visualization, biofeedback, better rest, exercise, food, YES! I could DO it! And if not, a month of pain medicine here and there to off-set daily use of the Imitrex. I felt good about things. Hence the post “Good Things.”

Yet even at my most optimistic, I thought about how I’d never been able to treat headaches only twice per week in my whole life. Even with parent mandated healthy meals and bedtimes; exercise in gym class; a counselor father skilled in progressive muscle relaxation and biofeedback with whom I practiced the techniques daily, my migraines were always closer to chronic than episodic. I knew it would be a long, hard road, particularly because simply NOT TREATING, trying to relax, meditate, ice-and-heat my way through the pain had always backfired with vomit-filled hysterical trips to the ER. And in fact I did have to go to the ER the day after my appt with Dr T, and then again a few weeks later. One seven day period I managed to take only 2 1/2 imitrex, but after that, due to weather and stress and lack of sleep and who knows what else, I slipped back into a daily pattern of pain. I had to leave the Headache Workshop early on Friday and stopped at an Urgent Care on the way home, where they prescribed 8 Norco tablets. Less strong than Percocet, less acetaminophen than Vicodin, they worked pretty well. After a few more days I did go to the ER yet again, and afterward decided it was time to see if I could get a 30 day script for Norco maybe, to complement the Imitrex until I made it through this cycle, especially since it is not as strong as Percocet, Schedule III instead of II. I called and spoke to the nurse who runs the Headache Workshop, the one who had heard in class how anxious I’d been feeling about having only one abortive at home during our mandatory discussion of “uncomfortable feelings.” I thought it might help me that this nurse now *knows* me, and at first it did seem to help as she listened to my situation patiently.

However, when she called back late the next morning and left a message after talking to Dr. T, she sounded uncomfortable. She said that I had “done so well coming off them by myself” that narcotics would not be reintroduced. Something was mentioned about my decision to reduce my Cymbalta – maybe I should go back up on it, she said (I had stayed at 30 mg). Make sure you go to the biofeedback, she said (I AM), and maybe see if “the physician who prescribed the anti-anxiety medication” would let me try something different if it’s not working. Now, that seemed almost passive aggressive. Yes, I picked up my last Ativan refill, but it was prescribed by the doctor who dumped me, which I thought they knew, and while it is helpful for sleep it does not relieve pain and neither does Cymbalta. So what I ended up taking away from the long awkward phone message was that Dr. T thinks that my pain is anxiety-produced, psychosomatic (to use an older term), or more to the point, “all in my head.” That it could be better “fixed” by returning to a higher dose of a brain-tweaking anti-depressant which I told her I hated than with the milder narcotic pain reliever I had requested. I felt punished. That they thought because I’d used the last available Ativan refill I couldn’t be trusted. That because during Workshop with this nurse I had expressed anxiety about having only one abortive medication at home, my admission was being used against me in the actual treatment of my illness by the last doctor in whom I still had been able to place a modicum of trust.

So here I sit, tears streaming down the right side of my face, where the sharp burning radiates from forehead to temple, behind the ear to my neck. I have located enough Imitrex to take it daily; when I run out I will have to return to the ER, where the more you visit, the worse you’re treated. Two imitrex today, and yes, the dastardly Ativan to calm my angry, scared pounding heart, orally disintegrating Zofran for nausea, a camphor pain patch at the site of the invisible impalement of what feels like splintered wood dipped in acid protruding from my skull. My whole self, slumped in disappointment and defeat. A cooling “micropearl” band velcroed as tightly as possible above my eyes, holding my protesting scalp in place, adding to the indignity. Benadryl, Zanaflex, all my “helpers” but not the one addition which could break this cycle and make me more comfortable, prevent me from needing to take the Imitrex every day, some kind of precious elixir of the opium poppy or factory facsimile. But no, because I am no longer deserving. Because I am a flickering file on a laptop screen, shimmering numbers which no longer add up to a patient worth bothering with or a real individual in pain. Textbook treatment. While every single migraine medicine causes rebound, cheap, old-school narcotics get the bad rap. Big Pharma’s serotonin-messing triptans, antidepressants, anti seizures, even antipsychotics are what get pushed. It’s an assembly line. I am a faceless cog in the machine. Serotonin Syndrome, Stockholm Syndrome, they won’t stop until I’m brainwashed. Until I accept that this is all there is for me. “For you, there isn’t any more.”*

And yes I know that any headache specialist or neurologist these days advises against narcotics for migraine pain. I know it’s the “right thing,” what she’s doing, in a typical case of migraine disease. But I have never been textbook, and I was ready to try this better accepted way as long as there was a little flexibility. I have been on a narcotic or barbiturate analgesic of some kind as well as an ergotamine or triptan migraine medicine plus a preventative and separate anti-depressant and/or anti-anxiety med since I was a child. And now, at 40, I am cut off just like that and expected to “relax,” do a bit of biofeedback, go back to my higher dose of Cymbalta like a good girl?

I don’t think so. I deserve the individualized treatment my complicated history demands.

But “for you, there isn’t any more.”*

*thanks to The Troops for Truddi Chase and their amazing chronicle of DID When Rabbit Howls for the quotation.

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