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….

Leave a comment


  1. R. G. Maines

     /  June 5, 2010

    Well, having read this, I now know that we were separated at birth! LMAO!!

    Oh, I hope we can become friends and have some sort of regular contact.

    I’ve been suffering with chronic severe migraine headaches for 24 years. I have female issues that have plagued me since puberty. I was unable to have children because of my screwed up body. I have a laundry list of bone related diseases and chronic pain. It hurts to sit, lie down and standing is pretty much out of the question! I endured child abuse from my earliest memories until I left home at 19 years old.

    If you’d like to get to know one another better, my public email account is rollingwithhusky@gmail.com

    • It took me a bit longer to leave home than 19 though. Amusingly (in a dark way), the psychologist I was seeing in my late teens/early 20s had recommended I get “as far away as possible” from my mother. I did and it helped immensely. After I moved closer, she pushed it one too many times and that was that. We now have a very circumscribed relationship. I only talk to her when I absolutely have to, which is usually prompted by the illness or death of a family member. I’m not one of those “forgiveness” people. I think I don’t really understand what that is supposed to mean. Maybe it’s good for some, but I do believe there are cases where distance and boundaries (to the point of “estrangement” if necessary) are a much better way of handling abuse than waiting for some hallmark moment.

  2. R. G. Maines

     /  June 6, 2010

    I totally agree!!

    I haven’t spoken to nor seen my mother for 24 years. This is her doing, but I’m satisfied with it. My sister is estranged, though I’ve tried to reconcile with her three times now, all of which ended with more hurt and abusive treatment, so I’m also satisfied at this point with the estrangement. It’s actually healthier and I found out the hard way.

    I have found that I’m not all about ‘forgiveness’ either. Every time I’ve tried, I got slapped around for it, so it’s not really something I feel I have to do anymore. I think I’m safer if I don’t forgive or forget, because then I remain totally aware of what I’m getting into, what I’m dealing with.

    I don’t think there are ‘hallmark moments’ in cases of abuse. I have come to believe, once an abuser always an abuser. Perhaps that’s an unfair way of thinking, but too bad.


  3. SNOW

     /  February 13, 2013

    Do you have an email address or contact form on here somewhere?

  4. You’ve been away for a while and so have I. I wasn’t doing so well in my head – finding things difficult to cope with and out of breath to help my daughter who is not doing well at all lately. ARE YOU OK? I’m worried about you – not only because I know how difficult this is to live with from a social standpoint but mostly from all it involves physically. I really hope you are OK.


    • Thank Linda. I am ok. Bad times in March and earlier in April. Just when I was getting my feet back under me, we had a terrorist attack up here in big northeastern city. I was in town that day, on the highway home when it happened. And I work downtown, not too far from where it was. So, emotionally rattled, a little bit freaked out, but getting by. And doing better now. Thank you for the concern, it means a lot to me. And I am glad that you’re back on line now too. 🙂

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