House call

I’m sitting here waiting for my neurologist’s office to return a call.

I called about 24 hours ago. I called again this morning. “Sometimes it takes up to 72 hours to return a call…” the woman who answers my call tells me.

It’s been over a month since my insurance company refused to cover the off label prescription for migraines my doctor gave me. My doctor’s office’s solution to this problem? That I should come in for another visit. Nothing in my condition has changed since my last visit, except that now I have migraines so often I can barely find a day when I don’t have one to drive the substantial distance to my doctor’s office.

The only problem which necessitates my needing to get into the office is that my doctor and my insurance company have different opinions on how I can and should take this drug. Meanwhile I have insurance which covers prescriptions and no migraine medication. To me, this sort of defines the term “clusterf*ck”.

So what do you do to remedy this kind of situation as quickly and cost effectively as possible? If I were to judge my options by my doctor’s office staff’s unwillingness or inability to work with me on this issue over the phone, it seems I have no choice but wait a month for an appointment, line up a ride in case it’s a bad day, do the 50 mile round trip to his office, pay a copay that is 1.5 times my normal copay (since he’s a specialist), and rack up charges for my insurance company to pay.

Doesn’t it seem like there should be a simpler, cheaper solution to this?

About this blog

Disclaimer – Nothing on this blog is meant to serve as or substitute for medical advice from a licensed health care provider. If you are sick, call a doctor. If you are very sick, call 911 (U.S.) or go to the closest ER.

The title – It comes from a passage in Margaret Atwood’s book “The Blind Assassin”, which isn’t a book about health other than that the main character/narrator comments on her experiences aging.  Here’s the whole piece that I read and bookmarked.

      “… enraged at myself. Or not at myself – at this bad turn my body has done me. After having imposed itself on us like the egomaniac it is, clamoring about its own needs, foisting upon us its own sordid and perilous desires,the body’s final trick is simply to absent itself. Just when you need it, just when you could use an arm or a leg, suddenly the body has other things to do. It falters, it buckles under you; it melts away as if made of snow, leaving nothing much. Two lumps of coal, and old hat, a grin made of pebbles. The bones dry sticks, easily broken.
    It’s an affront, all of that. Weak knees, arthritic knuckles, varicose veins, indignities – they aren’t ours, we never wanted or claimed them. Inside our heads we carry ourselves perfected – ourselves at the best age, and in the best light as well: never caught awkwardly, one leg out of a car, one still in, or picking our teeth, or slouching, or scratching our noses or bums.”

Content – Medical and health care. Patient-provider relations is a common theme. I am not a health care provider. I have no medical training. I am a person writing from a patient perspective, occasionally calling on my personal experiences or vocabulary gained working as nursing support staff, being raised by nurses, or married to an ER residency program for 5 years.

This is an anonymous blog because I do discuss my personal medical information and experiences which include topics like diarrhea predominant IBS and recto-vaginal endometriosis.

I’d prefer to keep the blog anonymous. Anonymous means it doesn’t have my name or personally identifiable information on it. If you think you know who I am from my writing, please keep it to yourself just out of respect and courtesy, if not ethics and principles.

My tone – It’s a problem for some, I know. I’ve chastized for being “negative” and “angry”. E.g., I got flamed by a woman on a Lyme patient list when I was trying to lighten someone else up, and I has used some sarcasm. I wrote back to a guy who’d been suffering from a hard to treat case of Lyme due to a delayed diagnosis and whose coworkers kept saying stuff like “How come you’re not better yet?” and “You’re still sick?” The poor guy was at his wit’s end and sounded pretty down. My reply was not about angels and virtual hugs but it was genuinely empathetic. What got me flamed was that it included something like this: “Hey you should wait until one of them gets sick. Then invite yourself over and jump up and down on their bed singing ‘people who need people’ out of tune at the top of your lungs” I hadn’t realized we were all supposed to be perfect martyrs, suffering with beatific grace. I will point out that although I say my tone is “a problem”, I’m not necessarily saying it’s MY problem. I claim it as my cultural heritage, coming from a working class metropolitan area in the Northeast of the US with heavy doses of Irish on both sides of my family.  If sarcasm, bluntness, and liberal use of profanity isn’t your personal style, don’t judge….consider this a diversity experience.

Making contact – Comments are moderated. Trolls will be rejected.  If you feel you’d like to get in touch with me, you can comment and let me know you want me to get in touch.  Please know though that I’m not interested in hearing about how I can be helped by magnet therapy, vitamin C overdosing, aura balancing, crystals, scrubbing with peelings from the inner skin of a nut found only on the south eastern side of Fiji, or whatever it is I’m supposed to be doing to put my mind-body vibes in harmony with the great cosmic whatnot to guarantee perfect health and good bowel movements. My dissatisfaction with medicine and health care is not because I believe western modern medicine can’t work well. I just think that the people practicing it sometimes end up practicing it or being limited in their practice of it such that it won’t.

About me

I was born in 1971.
This blog used to be on Blogger.
Female, no pregnancies, no kids.
I married a doctor when I was very young.
We divorced when I was very young.
It was a more or less amicable split.
We split the house, but I did not seek alimony.
(Re) married in 2008, to a swell guy who is unbelievably great about the health stuff.
I was raised in a working class city just south of Boston.
Swearing is part of my vocabulary.
I am a feminist.
I believe attitudes can be changed but it’s hard long work.
I am not religious and tend to dislike organized religions.
I believe personal spirituality and spiritualism are part of the normal, healthy human condition.
I am a survivor of long term childhood abuse.
It stopped when I became old enough and large enough to physically threaten my abusers.
I hate bullies.
I prefer direct discourse, even if it means a confrontation, to passive, indirect communication.
I am totally stupid about cats.
As an undergraduate, I majored in english with a concentration in linguistics, minored in anthropology with an interest in ancient classical history.
I love reading.
I started keeping a diary when I was 11 and have kept a journal ever since.
I was born into a family of nurses.
They tried to make me a nurse.
I worked in hospitals for 7 years as a unit clerk. It’s how I paid for college.
I hate sputum.
I was in grad school, studying how the human mind processes speech and language.  In Fall of 2008, I left my PhD program with an MA.   A very significant part of that decision was my health problems.  Another was my division director telling me that he was reluctant to consider “accommodations”.  If I’d had the energy, I’d have taken him to court.  As it is, I just made a voodoo doll of him and sometimes stick things into it.
I work in a college disability services, because I am great at finding solutions to practical problems, and I want to help make sure that people with disabilities have a fair chance at an education and a career.


Here are the things I’ve had (or have):

  • Ehlers-Danlos Syndrome, Type III

    In 2012, I was diagnosed with Ehlers-Danlos Type III/Hypermobility type.  There are a lot of signs that point to this as a diagnosis.  I am slowly starting to feel more comfortable with this diagnosis.  At first I was like “great, another controversial diagnosis” but I have to say, it covers A LOT of my day to day health issues.  It is also nice to have a single, encompassing, unifying diagnosis as I found out when I tried to fill out workplace disability accommodation forms in 2011.  You try listing everything that goes with EDS…see if you don’t come across as sounding nuts.  But now, I can write “EDS, Type III” and then describe the things that go with it that impact my daily functions.  Here’s a good, quick summary of EDS type III symptoms I have:  “Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common. Functional bowel disorders are likely underrecognized. Autonomic dysfunction, such as orthostatic intolerance, may also be seen. … Psychological dysfunction, psychosocial impairment, and emotional problems are common.”

  • Migraines

    I had my first migraine in the hospital where I was working in 1992. I was on the surgical unit, sitting at the nurses’ station, doing my clerical little things when I lost my peripheral vision. I now know the special fancy word for this, but at the time, the words I used for it were “f*ck, damn, what the hell?” They called my mom, the ER nurse manager at that hospital, to come take her half blind kid home for the day. No one said “migraine”. My mom might have but I had long stopped listening to her proposed diagnoses. Regardless, I didn’t know that’s what it was until about 5 years later when I had a scintillating scotoma followed by a huge whomping headache and vomiting while I was married. “Yep, that’s a migraine” my then husband said. For many years after this, I would have migraines now and then. Occasionally enough to only need moderate medication which would often expire or be recalled before I had used all of it. In 2005, I started having them more often. In the Fall of 2006, I had one which lasted a week and for several months had them so often I was cut off on my medication by my insurance company. I now take Elavil, 20 mg qd. This medication was prescribed at my recommendation and works quite well for me. I’ve had a few scary flickers now and then, and some headaches, but no classic, whomping migraines. Can I get a “woohoo!”? The only drawback is that now I have to list Amytriptyline on medical forms, which sucks because thus far I’ve successfully avoided being on anything like a psych med.  Update 2010: Except for some months long episodes, these were relatively under control until Fall 2009.  The vertigo returned first.  Then the migraines.  Again.  I am somewhat disconsolate about this turn of events.  Update 2013: After flirting with this state on and off since 2005, they seem to have transformed to chronic daily headaches which are worse in the summer.  It’s a real battle.

  • Lyme disease

    In 2002, an undisputed diagnosis. The spinal tap, done two months after the rash appeared, was “borderline”. At the time, I was told it “wasn’t positive”. We did two months of oral antibiotics (two because I was still quite unwell after one). An infectious disease doctor told me the tap was borderline when I developed neurological symptoms nearly a year later. I still don’t know why the oral antibiotics didn’t stop it from going neuro. Possibly it was a med problem, not quite non-compliance since I didn’t have the info to comply to. See, I was really worried about getting a yeast infection from all that antibiotic. So I had yogurt or a smoothie (with yogurt) for breakfast every day during that time period. I had it with my doxy. You’re not supposed to do that. I didn’t know, and I shudder at how dumb this sounds now, but I didn’t know you were not supposed to have dairy 2 hours before AND 2 hours after taking the pill. I’d get up, eat a little, have my doxy, then go straight for the coffee with cream and yogurt (I live for lactase – I love dairy even if it doesn’t love me). But even if I stupidly (or ignorantly) screwed up with the dairy/doxy combo, the month of IV antbiotics a year later should have cleared it all up, right? It did stop the horrible headaches, eye pain, and pronounced cognitive deficits. It didn’t stop the fatigue, the joint pain, the nearly constant low grade fevers, the red, hot, painful hands and feet…Update 2010: For the love of god, don’t even suggest I have “chronic Lyme” or “chronic Limes” or whatever.  I am firmly in the camp of post-lyme syndrome based on several factors, including my Lyme history and having the ability to read and understand research publications.  What I don’t understand from my stats and research background (plus the above mentioned family and work history), I ask my sister the biochemistry research assistant about.  Between the two of us, we usually muddle our way through pretty well.  Update 2013:   See Ehlers-Danlos, above.  How are these related?  If you have EDS and you loose muscle tone, you are screwed.  A year plus with acute Lyme symptoms = a year plus with very little exercise and activity.  Which = loss of muscle tone.  Which = more joints slipping and sliding and hurting, and more POTS/autonomic dysfunction type symptoms.   It’s a rotten cycle.

  • Hypoglycemia

    As a kid, I had a lot of digestive problems. I remember having a lot of “stomach aches” and I was underweight. When I was about 12, my mother finally took me to a pediatric GI service in Boston. They diagnosed lactose intolerance (hey no wonder those shakes didn’t help me gain weight!), GERD, and gastritis. I took Zantac and reglan. Who knew it wasn’t so good for kids? At 15, I had a follow up endoscopy. Prior to the endoscopy, a nurse was starting the IV. It was a hard stick. A few minutes after, I told my mother I felt unwell. I woke up to see a room full of faces – doctors, nurses, whatnot, and someone said “you had a seizure.” No. What I had was an episode of vasovagal syncope, induced by the IV nurse digging for gold in my arm and facilitated by my having been NPO for nearly 12 hours at that point, and I just happen to be one of those people who goes stiff and jerks a bit when she passes out. But no one considered that at the time. These “seizures” happened several more times during my adolescence – always when I had not eaten much in the 12 hours preceding the event. I pointed this out to the doctors back then. It seemed important to me but it was disregarded. I found out MUCH later that my aunt is hypoglycemic and, it seems, I am too. We can thank the nurses on one of my units for some not very controlled confirmation of the diagnosis and an ex boyfriend who was an insulin dependent diabetic for sticking me when I was cranky. I also had occasion to “vagal” in front of medical types later in life, and I was told “jeez, you’re one of those people who goes stiff!” I pushed for explanation and was told that this can happen, doesn’t mean it’s a seizure. Considering how many frigging EEGs I had as a teen for this, I think it was pretty well established there was no seizure activity going on. From how the doctors I had as a teen treated me, I’d had no idea that sometimes this was a normal part of passing out, for some people. It’s a good thing I refused those seizure meds.  Update 2013:   In 2010, the new PCP I started seeing ordered a glucose tolerance test, (I graphed my results in this post).  So now we have confirmation, I have a tendency towards hypoglycemia.  I have a blood sugar monitor, which has helped me immensely since I also seem to have hypoglycemia unawareness.  It’s too easy to write off feeling crappy as a migraine or just general crappiness.  And then I get too low, and I pass out.  So now, I check my sugar.  It’s disturbing how low I can get without realizing it and I think I can thank all the doctors of my youth who missed this diagnosis and let me go YEARS with hypoglycemic episodes for the legacy of hypoglycemia unawareness now.

  • Endometriosis

    Confirmed by laparoscopy in 2002, another lap in 2007 for worsening condition and indications it had invaded the uterosacral ligament. It had. Also, there was extensive endometriosis over the bowel and quite deep implants in the wall of the rectum. The short version? It sucked. I had an IUD placed during the surgery and we’ll see how that goes. So far, it’s cramps and lots of bleeding.  In 2011, I had a hysterectomy.  The pain was back, month long pain when sitting, having sex, moving.  And I was having these ungodly fatigue/dizziness flares right when my period ended.  Only thing I could think of was to get that thing out and then bite the bullet and have a hysterectomy.  It has helped.  I had a problem with some scarring in 2012 – the surgeon said it was “mild” but it was in a bad spot – tethering my cecum and boy does that hurt.

  • A set of really severe metal allergies

    I’ve had some skin reactions to various things throughout my life, some pretty severe.  I figured I had a nickel allergy, but also figured it was confined to skin because someone would have told me if nickel allergies can cause anything other than just gross rashes if you wear the wrong earrings.  That was incorrect.  In looking into the GI problems I have (see IBS, below), recurring mouth sores, and flushing, I ran across references to dental amalgam.  I started trying to ask dentists about whether it is possible for me to be allergic to amalgam, whether my recurring mouth sores, flushing, and GI symptoms might be related to the metal fillings my dentist in the New England Outback started placing in my mouth right around when these symptoms got going.  This did not go over well with the dentists because they heard “amalgam” and “health problems” and saw a middle aged woman sitting in front of them and assumed I was (a) hysterical and/or (b) stupid, and that I was talking about mercury.  No…and round and round we’d go.  Finally, and at the urging of my PCP and the recommendation of some otherwise not terribly helpful endocrine folks, I went to a damned allergist.  Test me for metal allergies! I demanded, after listing off my life in rashes and more recent, less circumscribed symptoms.  And wow, am I ever allergic.  In addition to some other substances, I had two big bad reactions to metals that are commonly found in amalgam fillings: nickel and palladium.  The allergist recommended a low nickel diet, which I’ve been following since the testing in Summer 2012 and it has helped, a lot.  I am working on getting the metal removed from my head this year.  My goal is to be amalgam free by 2014.

Here are the things I might have:

  • An autoimmune disease   

    Since getting Lyme, I have not had a week where I feel 100% well. I have had many where I do feel very unwell. I find I am agnostic on the controversy. In my case – given an elevated ANA level and a family history of autoimmune disorders on both sides – I worry my symptoms are signs of an autoimmune disease. I had a primary care who was keeping an eye on this but she left her practice to move to another state.

  • IBS?

    By spring of 2004, my very bad GI problems started up again. By spring of 2005, I had gone from 145 lbs to 110 lbs. I ate plenty, believe me. The only thing that made it hard to eat was that within 20 minutes of eating, I would experience intestinal cramping, sometimes quite severe. Then the diarrhea would start. I was, however, quite hungry. I was accused of having an eating disorder by a nurse at my GI doctors office. Some of my liver function values came back high and I was sent for every stinking hepatitis test under the sun. I went on hyoscyamine to slow things down, and most days that plus some immodium could keep the pain under control and the food in long enough for me to digest it. By December 2006, I was starting to lose that control again. I was declared IBS-full because there was nothing else it could be (except perhaps that endo on my bowel) and given no ptions but to take more hyoscyamine or similar drugs. I wasn’t convinced it was IBS, but I found mention of Elavil used to treat diarrhea predominant IBS and figured “if they’re gonna call it IBS, let’s treat it like IBS”. The very nice part about the Elavil is it does double duty for the migraines. My primary care doctor happily (yes, happily, almost joyfully) prescribed it for me about 2 months before she left her practice here. I had to up the dose once (from 10mg to 20) but so far I’ve managed to keep my weight and not be in very bad pain after each meal – even if I am still a little dependent on being near a toilet.  Update 2012:  But see “A set of really severe metal allergies“; Update 2013: Seems that my gut’s just been slowly losing good nerve function. I now have gastroparesis, so another state change and this one means more pain, learning to adapt to an entirely different manner of eating, and (although everything now goes very slowly), even more weight loss due to my just not digesting much of anything I eat. GP goes with Ehlers-Danlos Syndrome, as does Orthostatic Intolerance (which can cause GI problems like this). I am in the midst of trying to work this up, i.e. to see if I am – as I suspect – autonomically fucked and if that is distinct from or part of the EDS.

  • Peripheral neuropathy

    Still figuring this out. It explains the orthostatic intolerance, the headaches, quite a number of the other pains too (neck/shoulder, arm/hand), the GI stuff, the erythromelalgia, the flushing….