early alert

I am trying to see the bright side in all this medical malarkey that’s going on.  I started thinking of it with the gastroparesis and now I’m thinking of it in terms of the Reglan side effects.  I’m trying to see these things as more than just troubling symptoms and helpful signals from my body that things are not ok.

I have a habit of ignoring my body.  I’m actually a bit abusive to it.  This isn’t to say I haven’t taken care of it for vanity’s sake.  Like all well (or at least thoroughly) socialized women, I grew up caring about my appearance.  So I would go to the gym, not to be healthy but to feel better about how I looked.  I take care of my hair and skin, or at least try to.  I wear makeup.  I try to dress nicely, as much as the various symptoms will allow (i.e. no more heels for me due to the pains they elicit, long skirts help me keep cool in warm offices, etc.)  So add comfort to the list.  Comfort and vanity have been the two driving forces in what I will attend to in term of my body.  But just good health, caring for it like the precious thing that it is, not so much of a motivator for me in most of my life, now that I stop to think about it.

When I first get a new symptom, my reaction is to be very, very angry at my body.  I call it a bastard, a devil, a cruel and lazy partner I am saddled with.  I push it through even moments of obvious distress, if I think I can get away with it without sacrificing other things that are important to me.  My body is a means to an end.  It has never been a goal in and of itself.  What a change of perspective to consider it as something I need to and should take care of just for the sake of taking care of it.

This is contrary to messages we get socially.  “No pain, no gain”.  I grew up in the 70s and 80s.  The advent of fashionable “fitness” coincided with my adolescence.  What a model – the body is something to be mistrusted and abused in the name of pretty.  To quote a popular song from the period, “It’s better to look good than to feel good.”  And indeed, I look ok.  When I gained a bunch of weight on the progesterone therapy for my endometriosis back in 2003, people stopped me in the hallways to tell me how good I looked.  Must’ve been the flush in my cheeks from the chronic pulmonary problems the progesterone was giving me….never mind the hemorrhaging I had with my periods for those months that I was on that evil substance.  I looked good, I must’ve been doing something right!

When I subsequently lost all of that weight and then some after the GI problems started rearing up in 2004/2005, my dissertation advisor said “I wish I had what you have!” in reference to her own weight.  This from a woman who dressed like she shopped at the irregulars bin from the LL Bean cast offs store.  Never mind that I was slowly losing energy, becoming more susceptible to diseases, failing to make the grade in the PhD program because of countless delays that my poor health was wracking up.  I lost weight.  So culturally important.  I was not impressed with this comment at the time, but that reaction was just to share some of the fury I felt towards my unreliable body with my advisor for being an idiot and discounting how this limited me and pushed my goals increasingly out of reach.

Thinking of taking care of my body is not easy.  Today, I’m trying to see the boob reaction to my gastroparesis med as a gift.  As an early alert sign from my body that “hey, this isn’t ok.  This drug that only kind of works?  Yeah, it’s screwing things up royally in here.  You’re taking it so you don’t have heartburn and so you have less nausea so what?  So you can work?  Well in the meantime, you’re fucking us both up.  I’m hurting, please stop.”  The same goes for the GP.  I ignored, largely, the ramifications of my other autonomic symptoms.  It helped that there are any number of doctors out there who will not only neglect the import of these symptoms but actively encourage me to neglect it too.  But the GP is a lot less ignorable, discountable.  It is partly because it’s so new, I have lived with the really short syncope fuse for so long, I’ve adapted.  Not entirely, and it is progressing and I mourn that, but it just means doing MORE of what I have done in the past to accommodate.  With the GP, it’s a whole new ballgame.  New rules, new penalties for failure to play by them.  New constraints to explore and learn.  And all of it has been something I cursed my body for, every time I’ve had to say no to a snack or an outing.  Now, I’m trying to look at it – at least some of the time – as an important sign that I have to pay attention to.  It may never go away, and that thought does haunt me, but it’s having come on the scene means I now just HAVE to pay attention to my body’s messages.  I have to make sure I don’t have cancer, and I have to try to find and treat what’s causing it, even if that means eventually giving up a full time office job temporarily or permanently.

I can’t quite say thank you yet to my body.  But I can take on the responsibility for having neglected it for so long and I can try to start mending my ways.  I can try to start treating it like its something other than a plague, some whiny and spoiled child which fusses over nothing.  This is not nothing.

long lost people

Apologies for the long absence.  Tough times for me personally and up here in Big Northeastern City.  April is a cruel month.  I’ll post more about that later.

Last night, I got a call from a number I don’t know.  I recognized the area code as one from the woodsier part of Northeastern State but not the number.  Eh, that’s what voicemail’s for, I thought and let it go.

And then I got a text.  It was from one of my cousins and she mentioned that my mother (boo, hiss) had said she should call me about some medical stuff.  I had two sets of cousins for most of my childhood.  I say “most” because my mother was adopted and found her birthmother and a whole set of half sisters with kids when I was in my early teens.  So that opened up another bunch of cousins.  All boys, which was funny since the two sets I’d had up til then had been all girls.  Three girls who were my dad’s brother’s kids (although my dad came from a pretty large family, all my dad’s sisters had endometriosis back when that meant unaddressable infertility) and three girls who were my mother’s brother’s kids.  My mother and her brother were both adopted.  Remember that, it’s important.

The one who reached out to me was my uncle’s second child.  Another middle kid.  I have the following associations with her:

  • She was always very pretty, in a fairy-like way.  Gorgeous long blond hair on top of the delicate features she and her sister shared.  
  • Young.  Always so young.  All of our cousins were younger than my little brother, which meant that the eldest of the cousin sets was still my junior by some years.  The consequences of this are that although I felt an affinity for the middle daughters in both sets, there was a bit of a divide since in childhood social spheres, age does make a difference in peer relation. 
  • Peppy.  Not crazed with energy, but peppy.  
  • Easily injured.  It didn’t keep her down, but she did fall a lot.  

Seeing her text, I immediately called her back.  yeah, it was late and yeah I’m gonna pay for that today but I had been thinking of her and her family so much over the last few months.  I think it started around christmas time and has just been picking up steam.  Not a week has gone by where I don’t think of them.  We weren’t super close.  My parents were just kind of isolated and aloof so this meant we didn’t get really close with any extended family.  So I’m not sure why this branch of my tiny family tree was on my mind so much but it was.  And when I saw her text, I thought “ok if this doesn’t mean we need to connect, I don’t know what does.”  The first thing she said was that I sounded exactly the same.  It’s been almost 20 years since I last saw her, and that was at my first wedding.  I’d be surprised if I said more than a paragraph to her during that since I was stressed and running pillar to post and she was sick and down for the count some.

The next thing she said was “so I hear you’re a zebra too.”

What is up?  Health wise, I asked.  Turns out that my cousin has very likely got EDS, definitely has POTS, heavy on the “T”.  And endometriosis.  The list goes on but I don’t want to put all of her health info up here like it’s mine.  This is an anonymous blog but still, not my right.  Suffice it to say, we have a hell of a lot of overlap in clinical presentation.  Although she’s cold intolerant

I was staggered.  At one point, she said “I feel like I’m talking to myself.”  And I knew exactly what she meant.  “Are you sure weren’t not related by blood?”  Pretty sure.  But boy that is some strangeness.  “WTF was in the water?  Doesn’t it make you wonder if there was something in our environment?” I asked.  But it’s not like we spent a ton of time together or at each other’s houses.  We lived rather far apart too.  We were on city water, she was probably on well water given the rather rural town where her family lived.

Do you have any children?

The spouse of one of my co-workers asked me this last night.  It’s a bit of a loaded question, isn’t it?  I don’t fault her for it, it’s not like she dwelled on it when I said “no”.  But it is one of those things that makes me wonder how people in my position who had wanted kids must feel when it is asked.  It must be terrible.

My aunt, who is about 85, shared with me her own experiences with infertility way back in the 50s.  Backing up a bit, I should say that this is my father’s sister.  He has three.  None of them could have kids.  Between thyroid disease and/or endometriosis, they were trying to conceive in an era where I think the many different reasons for female fertility challenges were not at all well understood and where remedies were hard to come by.  I know that the first “test tube baby” was conceived within my lifetime.  It’s one of the first science news stories I remember being very aware of.  My paternal grandfather’s mother also struggled with “female problems”.   What started our discussion on this was that I participated in a genetic study on endometriosis.  They asked for an extensive family medical history and so I asked my aunt.  She was the eldest of the sibling set and was very aware of who had what. Once we had broken the silence on talking about it, she was able to share these anecdotes with me about her early adult life with this disease.  E.g., when she was first married, she told me, it didn’t take long before family and friends started calling her mother to ask why she hadn’t had kids or become pregnant yet.  Let that sink in.  You are a young but grown woman who is bright and who had wanted to continue her education beyond high school to become a teacher.  Your uptight Italian father said no, since he feels it is important for women to have babies and not to have jobs.  You wait, and finally you are married to your sweetheart, who has survived an extended stay in a Nazi prisoner camp and a bout of tuberculosis.   You are delighted that you and your beloved are together and married and you are excited about starting your family.  Months pass.  You start wondering what’s wrong, since you still are not showing signs of pregnancy.  You don’t really talk to anyone about it because people don’t do that back  then.  And then extended family and friends start calling YOUR MOM to ask about some very personal details of your life, your marriage, your intentions, your body.  Like there is something wrong with you, like you’re intentionally and stubbornly keeping yourself from conceiving.

Like my aunts, and their grandmother, I struggled with endometriosis from my adolescence.  I recall one particularly clueless doctor telling me that I probably would never be able to have kids.  My attitude then, and now, was “well good thing I don’t want any!”  And I didn’t, I truly never had.  As a young child, I had played with dolls but not baby dolls.  My dolls were projections of my conception of an adult me.  They had jobs and kitchens and cars.  They did not have families.  I remember playing dolls with the daughters of a family friend once, these girls had Barbie and Ken, and the play-time devolved into a screaming match between Barbie and Ken about who worked more and why they didn’t have time to take care of things around the home.  I recall Justine, the daughter closer to my age, bobbing Barbie up and down excitedly (the universal gesture for “the doll is talking”) and vocalizing Barbie’s increasing intolerance of Ken’s slothfulness.  “I work 100 hours a day, 8 days a week….” Barbie shrieked at one point to Ken, who was busy packing a bag and preparing a get away in the pink plastic sports car parked outside the Dream House.

I have had three surgeries for Endometriosis (02, 07, and 11), four if you count the scar tissue removal one this Spring.  I finally had had enough and said it’s time to get rid of the uterus.  This decision came after I’d been told that at my 07 surgery, there was evidence that the implants had worked their ways into the walls of my uterus.  Not the lining, the muscle tissue.  It was described as “enlarged and boggy”.  I referred to it as “old boggy” for years after.  In 11, I said goodbye to Old Boggy and had them take it out.  It has helped.  I remember researching the surgery in the months leading up to it, and finding a lot of chatter about the emotional impact of hysterectomy.  It irritated me for a while, mostly because I was like “god damn it, I want to know what HAPPENS.  Where do they put your ovaries?  What do they do with the ligaments and all that crap that used to hold your uterus in place?  I don’t give a crap about the loss of woman-hood.  Who the hell cares?  Old Boggy is not the seat of my gender identity!”  But thinking about my aunts, and thinking about friends I’ve known who really wanted a kid and struggled with conceiving or carrying a child made me realize that this probably is a big deal for a lot of women and the results of my internet searches were just reflecting that.

So I wonder, for those women, what it must be like to be at a party where two of the three married couples have young children who are doing all of the cute and/or annoying things that children do that draws adult attention, to be asked “do you have any children?”  It must suck.

sweating it out

I’ve been having miserable night sweats all week!  Gah – so not only does my sleep get disrupted, but I wake up shivering and drenched.  I’ve had bouts of this before, back when I had Lyme Disease and on and off some since then (when I was on hormones for the endo).  But what the hell?  Not infected, no temps (well, no greater than my usual slightly elevated temps).  I’m not even having a lot of overheating during the day since I’m at home and can control my immediate environment right now much better than I usually can at work.  It’s a pain in the ass!

adenomyosis

“That’s just a word for ‘fibroids’,” my neurologist said at my first appointment with him summer.  He had been reviewing my medical history.

    A bit of an excursionary side note here:  I always feel vaguely guilty when I list my medical conditions and/or recurring symptoms – like I have no valid right to claim to have them, like I am heaping it on, like I am writing out the invitations to a pity party.  Or at least, that I will be seen this way.  Why ever would a patient experience those feelings, one might ask.  I can tell you, they didn’t arise on their own.  These are iatrogenic, at least in large part.
    I used to try to keep it to only things I had a diagnosis for, a name for.  “Endometriosis, GERD, Migraines, IBS-D”  That’s a short list.  Again, because of the response of doctors.  “Who told you have …..” was a response I heard one too many times.  Interestingly, I’ve heard it for two things with confirmation – endometriosis and Lyme Disease.  “Who told you you had Lyme?!” one doctor said in an abrupt tone.  And this is when I thank my lucky stars I had the forethought to take a picture of my lyme rash.  The endo was questioned until I could firmly reply “It was confirmed by laparscopic surgery”.  But until I could say that, it was considered by some doctors a questionable diagnosis.
    So I know from those two test cases that there is a good chance I will be questioned, sometimes rather ham-handedly, about what I put down on that form.

The neurologist was not the first to question “adenomyosis”, a diagnosis I was given in 2007 after my last lap for

illustration of uterus with multiple fibroid tumors

Fibroids, from http://www.nlm.nih.gov

endometriosis.  The first one was a GYN I tried out briefly.  “That diagnosis can only be made after hysterectomy” I was told by the stressfully thin looking impatient young doctor.  I told her that I was just reporting what my last GYN had said, that he had been the one doing the surgery, and that he had made the diagnosis based on imaging and his observations during the lap.  At this, she bristled with contradiction, as if I had personally insulted her.  Really, I greatly dislike this sort of doctor, well to boil it down -I dislike this sort of person but especially so when they are in a person-caring profession.  No one is as smart as me! seems to be their motto.  Needless to say, she did not remain my GYN long.  Moreover, her estimate for recovery time post-hysterectomy was an unqualified “2 weeks”.  No “every patient is different” or “it depends somewhat on what we’ll find and need to do when we’re in there”.  And this, ladies, is why I vowed never to go to another general purpose OB/GYN again.  Any OB/GYNs out there reading this who don’t suck, I apologize for painting you all with a broad, drippy brush but time and again in your offices, I’ve run into various versions of this soul scouring combo of ignorance, arrogance, and dismissiveness.  I’ve had it with the bad apples in your bunch who should just stick to pap smears, breast exams, handing out birth control, and perinatal whatnot.  I’ve had it with being a pinata for someone who decides to engage in a farce of diagnostic gynecology despite having a clear lack of preparation for that sort of thing.  It may come down to a flaw in the general OB/GYN training or it might have to do with a selection bias – too many of a certain kind of person who chooses to go into OB/GYN (babysniffers?).  Whatever the reason, the field is rife with men and women who do more harm than good with it comes to dealing with gynecological pathology in a general practice rather than referring the patient out to someone with more experience.

Illustration of a uterus with intramural endometrial infiltration, adenomyosis

Adenomyosis, from http://www.med.nyu.edu

Back to the neurologist’s comment.  It turns out that no, adenomyosis is NOT just another word for fibroids. They are distinct entities, with some significant implications if one if mistaken for the other.

And as for what I put on my medical history forms now – I still go back and forth.  If I’m feeling like this doctor needs to know everything, I list by name what has been confirmed with objective tests or impressions (and yes, that includes adenomyosis and migraine) and for the others, I write descriptive symptoms, e.g. “chronic joint pain” “chronic fatigue” “nausea”.  And mostly, these days I just try to avoid situations where I would feel uncomfortable doing anything else.

B.A.T.H. time

It’s take your wife to work day…well for me anyhow.  or more properly for my husband.  I’m hanging out in his office, which is in a satellite campus of one B.A.T.H. after my pre-op “meet and greet” with surgeon number two at one of the other B.A.T.H.s ended early.  I could have tried to get into work, but my boss would probably find a way to screw me out of being paid for coming in.  I.e. I took the whole day based on my last appointment at this office (which took a loooooong time) and if I had come in early, there is nothing my boss has done to indicate that I would get that sick time credited back to me.  In fact, there are many things she’s done to indicate that I would NOT get it back.  Plus, I’d have been going in in jeans.  Oh dress code violation.  Very important.  And lastly, it’s not busy at work right now.  Ok, not lastly.  Lastly is that my boss has been harassing me for the last day and a half about my not being in 3 minutes after my start time (I’m scheduled for half past the hour, she sent the email at :33).  I punched in at :35, which means I was in the building even while she was off sending the email looking for me.  We’ve been having an email discussion, which I believe is about whether her commenting on is a reprimand or warning and which she thinks…well I don’t know what she thinks.  Not much and not well, I suspect.

Given all that, given that I am only allowed to take sick days in half or whole day chunks, and that speeding from surgery appointment to work I would have gotten in for 2.5 hours and not 4, I did not go in.  My husband on the other hand, offered to take me home or do something else, or I could come in with him to hit two work meetings where he would have been missed if he’d stayed out too.  I chose to come with him.

So I got to meet the gang.  And make some phone calls.  No, the vet does not know what made my cat so horribly sick so quickly.  Yes, my primary did send the referral for today’s surgical appointment.

Today’s surgical appointment. I have time so I may as well write it now.  Hubby’s probably going to be a few more minutes.

Total hysterectomy kids.  Ok, maybe not total.  I can’t keep total and radical straight.  Cervix plus uterus.  Leaving ovaries or an ovary if they aren’t a mess “which I doubt” the surgeon added.  Actually, despite a comment like that out of context, his manner was much more pleasant and open than what I expect of surgeons.  The doubtfulness came more as an affirmation of what I already know from pain, surgeries, and imaging.  It was kind of nice to have a doctor who wasn’t all “hey you never know…it could be all good when we go in.  I could find a prize or a pot of gold!”  I hate that crappy optimism.  I like realistic optimism, but I have a very low threshold for being bullshat and pushed to that false chipper hey it’s all great when me and my body know IT IS NOT.

I will be admitted at least for one night.  “With endo, we usually have more extensive work to do than with a hysterectomy for other reasons,” he said and paused.  I asked “and so the admit is for pain control?”  he nodded.  Ok again, I respect that.

I am a little torn on the cervix.  He said there were three recent studies showing that removing the cervix reduces the need for repeat surgery and that one they just concluded (a nine year diary study) showed no increased incident of sexual, urinary, or bowel dysfunction or of vaginal prolapse.  Ugh.  Jeeesus I hope not, all that sounds pretty horrible.  But right now, I am having considerable sexual consequences of the endo, and who knows if the bowel is related.  So.  I’m going to talk to a friend of mine who did this surgery.  I think she had them leave her cervix and has regretted it.

I also talked to the surgeon about the joint pain and asked if there is a way that they can use something to help reduce the strain on the joints during surgery.  I had read about soft collars for the neck and using sandbags.  He made a note and said “certainly…but please do remind us pre-operatively.”

And last, I got my FML form filled out.  We went with three and a half weeks off, with the understanding that if I need more or less, it can be amended.  Once I have that submitted, I will tell my boss.  I tried to do it the other way around last summer and ended up in a bad situation.  Not going there again.

slow motion

The last few days have been happening in slow motion.  Not dramatic slow-mo, slow like a battery that’s nearing its end or a watch with a slipping gear.  There will be isolated episodes of activity, of what seems like normal, or possibly even a little over-fast and manic.  Then back to the crawl.

It makes it hard to do things.  One of those things is put together papers for my appointment with the surgeon today.  What papers?  Med list, FMLA crap, and questions/concerns.  I managed to do the first two – more or less – last night.  Questions/concerns.  That is a problem.  The document was open on my computer for well over 2 hours last night but all I got was “November 22, 2010” and the date and address for the appointment today.  It’s not difficult to see where the reticence comes from.  This is the history part.  This is where I think I need to find the special words to say to convey to the doctor what is wrong with me (globally or at least more globally than just the endometriosis and adenomyosis, the reasons for the surgery).  I say I think because although I’ve tried that for years and years with doctors, been motivated by the belief that it is my job to prepare and provide information in a way that is understandable and which will be least likely to trigger comprehension impeding psycho-social cues for them (i.e. “crazy lady patient with hysteria” or the more sophisticated but still unenlightened “woman whose gender identity won’t allow her to seek power and control in other spheres of her life and who thus subjects her own body, which she of course feels deep, feminine shame about, to a sort of cruel tyranny of over vigilance and care”).

I’ve taken on that job, that probably impossible job of leading the communication (without appearing to lead of course, that also is bad.  That = “pushy uppity strident bitch”) through the mess of perceptions and perceived perceptions and so on ad infinitum or at least ad-end of the cognitive system’s ability to process on so many self entailing, embedded levels at once.  And you know what?  I fucking hate that job.  I hate that it is mine to do and I hate that I have to do it.  I’ve tried abdicating.  It doesn’t work.  And so the only responsible thing to do is to continue, to try, to refine, to type up the questions in advance.

questionable answers

Been having a hard time getting to sleep – I get sleepy, I start to fall alseep, then I’m awake.  I’m blaming pain, for a couple of these late nights at least.  I’m thinking it’s the endo that’s the culprit at the moment.  I”m having a lot of pelvic and back pain, coming along with hip pain and pain that extends down into my leg.  It feels like I’ve got something ponderous and caustic deep in my pelvis, pulling one minute and throbbing the next.

I had been reminding myself that I am doing something that will probably help, at least some (I hope) with the endometriosis related pain.  I.e. surgery in January.  However, that plan – which already was a bit scary – became something that is less of a certainty or at least less of a reassurance after my last primary care appointment about a week ago.  I reminded my primary that I’m having a hysterectomy in January.  He looked dismayed and said “Surgery?  Oh…that’s going to make everything worse!”

That was not an expected response.  I mean, I know that given my current crappy overall (i.e. not gynecological) health is not great but I guess I figured it wasn’t something that required that level of concern.  I figured that based on how my doctors (current and past) treat it.

I explained how much pain and trouble the endo causes me, that it’s no longer just endo but also adenomyosis (he’s not up on my gynecological history), that I figure I can do this now or I can wait again until it’s invaded more areas, that the last time I had surgery for endo they found it had worked its way deep into my rectum, that it was a daily source of pain for me, that I don’t want to wait for it to involve my bladder or to get so bad I need a bowel resection.

Then we went over test results.  Yes, notice that there was not much segue there?  I did.  But that is the nature of doctor’s appointments, even lengthy ones.  Jump jump jump…what’s next?  Next?  I’d like to find a way to navigate them so they are not like that.  I suspect not being my doctor’s last appointment on a Friday would be a good start but I take those appointments so they wouldn’t interfere with work, partly because I am having surgery in January and am trying not to be that person who is ALWAYS out for medical stuff (the issue of scheduling appointments is in fact how surgery came up at my appointment).

The results included urine from early September that showed high “adrenaline by products” or something like that.  “It could just be your stress response” he said, then added “but has anyone ever worked you up for a pheochromocytoma?”  Um, no.  I spent time the days immediately after the appointment looking it up and trying to find reasons why I wouldn’t have this so I don’t have to (a) go without cigarettes and coffee for three days and then (b) do another 24 hour urine collection.  “Ah, hypertension, it says that you get hypertensive and I am definitely not hypertensive!” but then it seems you can have this and be “normotensive” or have episodes of hypertension.

We ended the appointment with discussion of my nutritional status “why are you using up so much thiamine?” he said.  He thinks outloud, I don’t think he was actually asking me to provide an explanation.  Did I feel better after the IVs in September he asked.  Not immediately, I told him, but I’m not flattened right now and I just finished one of the busiest times at work and was in the middle of a move.  If I’d done either of those in September, I wouldn’t be able to get out of bed.  So maybe it did help.  We can do more, he offered.  “Can we skip the Mg in the bag though?” I asked.  I explained that it took a long time to infuse because of  magnesium.  He responded that it shouldn’t have taken so long, I responded that it did because they couldn’t put it in faster than 300/hr since it hurt too much going in (Mg is a little caustic apparently).  We left it at he was going to check how much Mg he had ordered.  Appointment ended, orders to get more bloodwork and a caffeine and nicotine deprived 24 hour urine collection.  I left without a clear answer on the IV and what to do about my crappy vitamin levels.  I asked the nurse to please ask him about it when I was leaving and realized we hadn’t finalized this during my appointment.  It’s been over a week and I haven’t heard back.

And in the meantime, in addition to deciding I should do the 24 hour urine (then shouldn’t, then should, then shouldn’t…yeah, it’s been one of those weeks), I realized that I have no idea what our game plan is, if there is one, or really even what game we’re in.  Surgery?  Who decides if it’s ok or if it really will “make everything worse”?

So I’ll be calling.  What the hell am I going to say though?  I’ve been thinking about this for the last two days.  How am I going to NOT sound like an incoherent nuisance and instead convey what I’d like help with (coherently)?  Every time I think I have a plan, I second guess myself and I find a reason not to call.  This sucks.

Last night, after waking up to pain here pain there, I finally fell and stayed asleep.  I had violent dreams.  I dreamed that I was talking to a doctor (some random one from central casting in my brain) who was being casually but cruelly dismissive about something that was troubling me.  The conversation ended when he said something about migraines, I can’t recall exactly but it pissed me off.  I left and found myself in a hallway that reminded me of one of the basement levels at a hospital where I worked (in my dream, it was slightly less creepy).  There were a bunch of lockers nearby and I knew that they were doctors’ lockers.  I busied myself ripping things out of them, balling them up and tossing them around the basement.  It was quite cathartic.  Until security came.  I charged at security and got thrown down to the ground. Apparently my superego is still somewhat in charge.  And strong.

omg emg

Ok that hurt.  The shocks were fine – my body’s given me more ugly than that.  Nothing worse than a bad static shock.  But the needles in the muscles?  No ma’am.  Not ok.

It wasn’t like excruciating but I’ll tell ya, it was (a) definitely a bit painful, (b) something of the type that makes me go “eerrrrrrrgggh”, and (c) definitely more painful when your muscle cramps with a needle in it.  Nearly called the doctor a bad name.  I managed to change it to “faaaaah-aaaaa-haaaa!” instead.  I’m glad.  He’s not a bad guy and I don’t want to be hurling obscenities at him.

I have friend who had one some years ago and he swore it wasn’t painful.  I suppose this is a nice example of how we’re all just a little bit different.  My guess is he probably wouldn’t be able to get out of bed with the kind of pain I get from an endometriosis period.  And I can’t have needles in my muscles without breaking out in a cold sweat and swearing.

And an interesting thing about the EEG – the gross all over thrumming, whooshing vibrating feeling plus headache and nausea I got from the hyperventilation part?  That is exactly what I feel like when I feel really bad.  To my knowledge, I’m not hyperventilating during those episodes – and it’s not tingling hands and feet, it’s WHOOSHzzzzzzzWHOOSHzzzzzzzWHOOSHzzzzzzz all through my torso, neck, head, and limbs.  Sometimes my eyes get in on it too pulsing dark and light dark and light.  And I’m usually more or less in a sort of drooling stupor.

keeeerrrriste!

And damn.  That drug (zonisamide) was bad news.  I stopped it on Wednesday after I heard back from the neurologist who said “stop taking it.  It’s not worth it,” and still it’s making me sick enough to need zofran (nausea med) and I’ve got blood in my pee now.  Holy cow.  So Wednesday night I came home and puked.  Thursday the diffuse pain I’d been having in my back and abdomen turned into rather localized pain that came and went – dull but bothersome in the back and sharp and radiating down in the front.  All on the left side.  I came home and puked again and had a wave of “wow that hurts”.  When husband got home, I went to the hospital.  They were quite nice.  We did not do a CT although the doctor went so far as to order one, then cancel it.  Which I’m ok with because honestly, my gut’s been looked at inside and out (and recently!) and my endo, well, this doesn’t seem like endo.  This seems like the drug.  It might not be but the timing is mighty suspect.

So I now know several things:

  1. I am a confirmed lightweight when it comes to narcotic pain meds.  1/2 mg of dilaudid put me out last night.
  2. I like zofran because I hate nausea.
  3. Zonisamide is definitely “not worth it”.  Not for me anyhow.