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?

   

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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