plus c’est la mème chose

When I saw the missed call and voicemail from my doctor’s office on my phone during my dinner break at work, I wasn’t worried. After all, I was set for an appointment there in two days to receive Botox for Migraine, a long and intrusive procedure requiring 31 injections and all sorts of hoops to jump through. It was very exciting for both me and the office, as it was set up right before Dr H’s departure and I would be their first (though not Dr. K’s, I made sure).

When I heard Kat’s voice projecting tinnily through my little iphone speaker, however, I became alarmed. Due to the severity of my illness and frequent phone calls, I’ve become something close to friends in my acquaintance with Kat, who is Dr. H’s sister, and Melissa, with whom I share many mutual friends. So I knew that Kat was upset when she haltingly began to explain that despite what Medical Mutual had told J when he called weeks before, they were more than likely going to reject the claim because Dr. K is not a Board Certified Neurologist or Pain Specialist. Kat’s voice broke as she ended the message, and I immediately called john, tears streaming down my face. They’d told him. THEY TOLD HIM THEY WOULD COVER IT. I was emotionally and physically prepared. I’d taken most of the day off work, as had john. And I was desperately counting on the possible, probable even, temporary relief (it worked briefly for me before, in its experimental stages, with fewer injections). When he answered I could barely choke out words, and at first, though clearly disappointed, he said “We weren’t sure it would work anyway,” and “You can get it with Dr T, set it up in August.” Those were not the fighting-tooth-and-nail responses I was hoping for, so I said okay through my sobs and hung up. And sat on the hard floor in the staff room at work and cried.

When john called back in about 10 minutes, he said to my relief that he HAD called Medical Mutual to demand answers. He told me the person he’d talked to had been very nice, and had said that nothing had been denied, and in fact she was still sure it would be covered, as Dr. K was on their “approved list.” The person said “We will approve it, the doctor’s office just today sent in some different procedure codes, so those have to be reviewed.” I was relieved; I wanted to believe. It was going to be okay after all. We also discussed that while expensive, the procedure didn’t seem likely to cost more than $1300, and we’d just gotten our tax return. My parents paid when I’d gotten it done before, and I thought I remembered something like $700 per treatment. We’ll get it done, john and I promised. I was keeping my appointment Friday, and one way or another, we’d get it done. I talked about it on Facebook, researched it some more, and went to bed feeling relatively optimistic.

The next morning, however, everything was shot to hell by 11am. I tried to wait for the office to call me, as they said they would, but Medco Health got to me first, the prescription side of my insurance. I was told that my prior authorization to receive more Imitrex than my plan allows (9 tablets per month) had been denied. My doctor’s office had failed to provide evidence that I get more than 4 headaches per month!! Ha ha ha ha ha…..

That, I at least knew, would be easily remedied as it happens almost every time my prior auth has to be renewed. “I get more than 4 headaches per WEEK,” I told the lady, who blandly told me to submit my appeal in writing to blah blah blah. I hung up (wouldn’t it be great if we could still “slam down” our phones?) and called the doctor’s office. Imitrex, no problem, Kat said, so sorry, we’ll remedy that, but the Botox was still a huge source of confusion. I was put through to Lilly, the nurse, who said that because they were told it would most likely be denied, they hadn’t yet ordered the drug so it wouldn’t be there by Friday, and it was going to cost THEIR office $1000 and she had no idea what our final cost would be but it would be more than we could pay. My throat started closing up. While we were talking, going through the whole “but they told my husband,” “well they told us,” Medical Mutual called to talk to Lilly and I was put on hold. Denied, she said when she returned, no way around it. I started to cry. Lilly was very kind. I hung up and collapsed onto the couch with a very concerned Zo, clutching my quiet but still glowing phone, my last instrument of hope all morning. I tried not to shriek or sob hysterically in front of my daughter, swallowing helpless anger and frustration and grief and feeling the inevitable headache tide somewhere in the briny inner dark. I turned my wet face to my daughter and wordlessly touched my nose to hers. She dabbed at a tear with her fingertip. “I got you, Mommy,” Zo said. And I was glad.

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plus ça change

04.23.12
Sigh of relief. My appointment with the attractive, young, and aloof Dr. “Manhands” went well. Even though he knew I would be seeing Dr. T in August, he still asked questions and put some thought into my situation. He asked whether I’d ever tried Lamictal, which is a mood-stabilizing anti-seizure med used off-label for migraine. (Most migraine preventatives are off-label – only Depakote and Topamax have been officially approved, which is just another weird and unfortunate characteristic of migraine treatment.) I told him I had, that I didn’t remember having terrible side effects with it, but it must not have worked too well. He said, “I don’t have any new ideas, you’ve tried every available treatment.” I appreciated this, because it indicated to me that he understood the frustrating position I’m in. No “answers,” no hope of any real improvement. Knowing that in order to work and play and just live, I have to treat my headaches with some sort of abortive medication almost daily, which creates more pain. Pain (+living) = medicine = more pain. He said, “I have no problem continuing with these meds, but you *will* have rebound.” I know, right? As they say.

I prefer the term “rebound headache” to the more in vogue “medication overuse headache” because “overuse” implies fault on the part of the sufferer. I hear it as a stern, scolding voice in my head, not unlike the distinct condescending cadence of Dr Gotohell in the ER: “You are taking too much medication. Your history of narcotics use is 8 pages long… I could lose my license for giving you dilaudid, and I should know, I was head of the DEA for five years…” and the sinister implication underneath: “you are an addict, you are a drug seeker… you are an anxious, over-dramatic hypochondriac.” Meanwhile I’m curled up fetal on the hospital bed, sobbing and chewing my lips, pounding my forehead with my fists, knowing that without dilaudid I will go home and start vomiting and will just have to return. The biggest insult of all: a Toradol IM injection.

Another thing I like about the term rebound as opposed to overuse: it focuses on the action of the drug, not the patient. I picture a black bouncy ball ricocheting off of a brick wall: throw it and it bounces back, throw it again, harder, and back it comes, harder, hitting you in the face. Thwack. Rebound. But sometimes you have to throw the ball anyway.

I am supposed to get Botox treatment for migraine on Friday. 31 injections in the face, forehead, temples, neck and shoulders for 10% reduction in pain? Really? Not much evidence of efficacy, yet the FDA approved Botox for migraine treatment in 2010. For some reason. I’m nervous and excited and feel I might get a good 2 – 3 weeks out of it. Even two relatively pain-free weeks would be a huge gift. My fingers, toes, and the misbehaving, constricting veins in my head are all crossed.

what is life for

These are among the very worst days of my life. Days when there is something important going on and it’s imperative I not be sick. Days that only come once a year, like your daughter’s birthday party with her first grade friends. Significant for so many reasons.

That significance on its own, the heavy weight of it, might be enough to cause a headache. The fact that dealing with other parents strikes right at the tenderest core of my social anxiety doesn’t help. We had so much left to do in preparation this morning, which didn’t help, Zo is sick and grouchy, a cold front just passed, and I ate a cookie or two last night. None of that helps. My only option for medicine is Imitrex, which I’m probably starting to rebound on. That doesn’t help.

X’s friend P had a swimming party for his birthday today also. I was planning to go to Meijer with her to get his gift, get goodie bag stuff for her guests, and look at bathing suits since hers is too small. We needed to get balloons and pick up the cake. Instead I had to return to bed with the heating pad, leaving sir with both girls, 3 places to go and a party in 3 hours. More Imitrex, and, fortunately, scavenged Fioricet 3. I cupped my precious older daughter’s face in my hands and promised her it would be okay, that Daddy would take her to get everything instead, that I would rest and get better so I could be at her party at the pizza place, which I wanted and needed to do more than anything in the world. My smart, sensitive, newly-seven year old X, who only this past year began to grasp what it meant every time I had to go to the hospital, that every time I have to go lie down it is to prevent another ER visit. Who over the past year has seen me be admitted 6 times and have major surgery (surgery which we told her would greatly improve things). This daughter looked at me bravely this morning and said “Okay, Mama.” And I went back to bed and cried.

The combination of the Imitrex and Fioricet worked, and I made it to the party. I was able to be charming and appropriate with the moms, enthusiastic and sweet to X’s friends. The party was a success.

After kid bedtime, John and I watched some episodes of Lost. He went to the Sundae Station to get us some ice cream. I got hot fudge on mine, because lately chocolate has been the most benign of my triggers, with fruit being far worse. And you know what, I wanted it. And my headache came back. And I got mad.

What is life for? What kind of life is it if I have to sit very still, go nowhere, eat nothing but rice? Get up at exactly 7 am and go to bed at 12? So, then I would get fewer headaches, maybe, but I wouldn’t be happy. I am going through a bit of an angry phase. This is not the way I want to live.

Monday I see Dr. “Manhands” at BG Family Physicians, hoping he will maintain what Dr. H was doing until I can get in with my neurologist in August. If he agrees, I should get more medicine and at least be back to having a variety of options. And Botox, I guess, on Friday. And me, very quiet, small, and still, hoping the searing, insidious flash of the illness in my brain will do the same.

there’s a lady who’s sure

April 11, 2012

Dear Beth,

Writing and relating to people are two skills I possess which I am inordinately proud of. I’m sitting at the Community Center right now, with very little time in between editing the Summer Programming Brochure and running the Facility Reports, knowing that my husband is coming to your Open House, not wanting him to go empty handed. I have things to say to you. I just wish that I had the time to sit and compose all of the beautiful things in my heart. I know there are things I’ll forget.

No doctor (or nurse, or therapist) has ever made me feel as validated as you have. From the start, when you took care of me in the hospital, you volunteered to take over my headache care, because you wanted to. When I felt so many wanted to wash their hands of my frustrating case, you wanted to take it on. You always saw me and not my headaches, which is quite a paradox, since there are times when my identity is inexorably wrapped up in the illness.

There are two moments which stand out in my mind when I felt most completely validated by your care of me – I can’t think of a better word than validated – “believed” also comes to mind. The time you agreed to write the letter for me to take with me to the ER, probably knowing the consternation that might cause the doctors there, yet you did it anyway. That indicated to me how much you believed that I did in fact need those certain medications once per month when my headaches got out of control. You truly believed that my pain was that severe. The other moment, the most obvious one, was when you said that I might be a good candidate for ovary removal. Such a surgery for migraine is not unheard of, but is controversial and rare. You said “If Dr. P doesn’t want to do it, we’ll find someone who will.”

You are the rare person who was able to see the severity and frequency of my pain AND see me as a separate individual. As well as how the two are wrapped together: me and the headache. You understood that the most important thing to me was trying to live a somewhat normal life; to hold a job I enjoyed and to take care of my children. And that I would need certain medications to accomplish that as well as every other possible therapy or method you could think of. You never gave up. You never seemed to tire of me or my situation. You became a friend. I realize now that part of that empathy and understanding may have been due to your own struggle with MS. I sort of knew because I had been told by another of your patients (Leah) which I am glad of, so that this didn’t come as so much of a shock.

I am so sorry that you’re having to give up a calling which you obviously love so much, but I’m glad that you will be able to devote the best of your time to your family. And now in a role reversal, I have empathy for you, because no one understands chronic pain and illness like another survivor (so to speak). Of course, MS is much more severe and complicated than migraine. And I am so sorry that you have been silently enduring, holding on for us, your patients, for as long as you have. Invisibly suffering. It breaks my heart for you. But, at the same time, you are the bravest woman I know and you have made the best choice for you and your family. Instead of pity, what you should be offered is congratulations.

Kelly and Deanne just walked in to take their Spin class here. I met with Dr. K this morning. The good news is, we found out today that my insurance will absolutely cover Botox treatment for migraine, and I am going to schedule it with her as soon as possible. The bad news is I didn’t click with her or feel that she understood my needs, coming from a DO background with more holistic views. Every doctor is different. I’m not saying that I wouldn’t try new things, even Chinese Herbal Compounded Combinations from some Ann Arbor neurologists who used to work at U of M. But I need to have some medication as back up. I am going to make an appointment with Dr. M to see what he says, and probably the best thing to come out of this is that I have an appointment with Dr. T in August – the first she had available. But if I can’t have you, I really want a neurologist, an expert in the field, even one who is fairly inaccessible. So that is my plan. I realize that this isn’t your concern anymore and I don’t want it to be, but at the same time, I kind of thought you might like to know.

I need to email this letter to John so he can go to the Open House and deliver it to you. I wish you and your family all the best, and I thank you from the bottom of my heart for validating me, believing in me, and essentially saving my life. And I know that I am only one of countless patients who feel this way about everything you’ve done for them.

All The Best,
elizabeth

what i need

At Home:
Water
Gluten-free foods
Fragrance-free soaps
Bio-Freeze
Heating pad
Cold packs
Pressure band
“Migrelief” herbal/ vitamin tabs
(feverfew/magnesium/vitB2)
Excedrin
Benadryl
Sudafed
Caffeine tabs
Ibuprofen
Ultracet
Xanax
Imitrex
Zanaflex
Percocet
DHE (Dihydroergotamine) 1 mg
ampules
25G Syringes
Dark
Quiet

In The ER:
IV fluids
Dilaudid – preferably 2 mg
Zofran or Phenergan
Benadryl
Decadron
Any other painkiller, including morphine, will not work.
Being treated respectfully is a plus.
Not having to wait for 2 hours to be seen, while banging head on wall and/or vomiting, is also a plus.
Not being in the room next to the crying baby is a plus.
Getting one of the rooms with a door not a curtain is a plus.
Getting Dr. Baker or Dr. Hess is the best case scenario. Unsurprisingly, they are both women.

In The Hospital:
IV fluids
Dilaudid immediately for acute, intense pain
Zofran or Phenergan for vomiting
Benadryl to prevent reaction to Phenergan
Once 24 hours has passed since last dose of Imitrex (because interaction can be fatal): DHE (Dihydroergotamine), preferably IV. DHE makes pain / nausea worse initially, but after 2-3 doses disintegrates headache at root. Dilaudid works from the top, covering and temporarily easing rather than eliminating. Both are essential. Both are hard to get because one is the strongest narcotic available and the other is an unusual, rarely-used old fashioned ergotamine derivative. Nurses have usually never heard of it and I can hear their thoughts, based on facial expressions: “The doctor gave in and let you have dilaudid, and that wasn’t enough? Now you also need this – D A G or whatever it is? We’ll see about that. Hmph!”
Being treated respectfully is always a plus. Nice, accommodating nurses, a hospitalist who knows what she’s doing…
WC Hospital’s long-time neurologist Dr. Mammoud learning better English would be a plus.
Once I’ve stopped vomiting, gluten-free hospital food tastes better than it has a right to.
Simba and picture of John & girls (comfort objects).
Cell phone, to communicate with outside world.
Comfy pajama pants & socks.

“Migraine Disease,” as it’s beginning to be called, is an invisible illness, to the point where nothing even shows up on MRIs, EEGs, or CAT scans. Invisible inside and out. But by the time I end up in the hospital it is very evident how terribly sick I am. Why, even then, is it so hard to get respect from medical professionals?

What I HAVE is unending, tireless support from my family and friends. A job from which I can’t get fired, with plenty of sick days and vacation time. I don’t take those things for granted. But not hiaving a doctor to care for my headaches right now is unnerving and scary. Dr. T doesn’t have any openings until August. Until then, I just have to keep my fingers crossed.

end of my rope

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

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

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

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

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