Emily (paintedglass) wrote,
Emily
paintedglass

Partial Symptom Log (Winter/Spring '14)

[03/19/14 - 8pm - 3am (03/20)]
Possibly worst cramps ever experienced. Pain-scale=11/10
Also, diarrhea, lower back pain, abdominal pain, fatigue.

[03/21/14 - 3:45pm] - Temp._99.7-99.8. (While studying french grammar online, sitting in armchair.)
(NSAIDS? - ?)
Lower back pain, abdominal pain, fatigue.

[03/22/14 - 3:32am] - Temp._99.3-99.4. (While watching TV, sitting in armchair.)
(NSAIDS? - ?)
Constipation, lower back pain, abdominal pain, fatigue.

[03/23/14 - 1:32am] - Temp._99.2. (While watching TV, sitting in armchair.)
(NSAIDS? - Yes.)
Constipation, lower back pain, abdominal pain, fatigue.

[03/23/14 - 5:32pm] - Temp._99.9-100. (While sitting on floor, studying.)
(NSAIDS? - Yes; 1000mg acetaminophen approx. 2hrs. prior to measuring.)
Constipation, lower back pain, abdominal pain, fatigue.

[03/25/14 - 5:45am] - Temp._98.5.<---but, shivering?
Constipation, lower back pain, abdominal pain, fatigue.

[03/27/14 - 1:42am] = Temp. 98.8
Diarrhea, lower back pain, abdominal pain, fatigue.

[03-27-14 - 11:49pm]
New, sharp/twinging pain in lower back on left side by tailbone. Duller/deeper lower backache
over the last 2mo. has become pretty bad (worse) in the past week, bi-laterally painful w/ certain
movements and worse on the left side while at rest.
Diarrhea, abdominal pain, fatigue.

[03/29/14 - 4:51pm] - Temp._99.4-99.5.
Diarrhea, lower back pain, abdominal pain, fatigue.

[03/31/14 - 4:00pm] - Temp._99.8
(NSAIDS? Yes.)
Diarrhea, lower back pain, abdominal pain, fatigue.

[04/01/14 - 2pm] - Temp._99.8-99.9.
(NSAIDS? Not in last 10 hrs..)
Diarrhea, lower back pain, abdominal pain, fatigue.

[04/01/14 - 7:50pm] - Temp._99.7.
(NSAIDS? Yes.)
(Quite severe back-pain, greatly diminishing range of movement and activity level. Abdominal
cramping as the day progressed which started with a temporary subsiding of the recurrent bouts of
diarrhea, and seemed more diffuse/possibly-GI-related at first, but then felt progressively more
'reproductive' in quality, and began to involve the pelvic and then groin/leg area as the diarrhea
returned. Lack of appetite. Tylenol @ 2,000mg seems worthless today, concerned to take more on a
less-than-full stomach. [...] ...Okay, in all honesty, it's like 2am in the morning and the pain I'm in right
now is almost indistinguishable qualitatively from the pain of my last period (not including that one,
worst bout of 10+/10 cramps that tore through 10hrs of my evening like an F5 tornado on 03/19; that
pain was qualitatively similar, but of such greater intensity as to be categorically unique)... since the
end of that bout of cramps my abdo./pelvic pain has seemed more diffuse, and possibly GI-related w/
lots of diarrhea that came back after a 4-day pause following my period and until today and yesterday it
seemed like it was, I don't know, maybe more gastro than gyno... ...I have since sort of reinterpreted my
lower-back/sacral pain (initially in my mind strongly associated w/ period pain due to its initial
emergence within a 6hr span of severe period/period-pain symptoms onset) as possibly being GIrelated
due to its having stayed around between menstrual periods for going on 3 cycles. So I've been
wearing the GI-centric glasses in looking at and thinking about my symptoms recently since my period
ended (having been so @#$@# intense this month, but so relatively short-lived) and it took me a
minute to tune-in to what I'd been trying to tune-the-fuck-out all day and actually realize that this pain
was, with the passage of the day, becoming increasingly period-cramp-like, rather than tenderness/-
inflammation/-backache/-diarrhea-cramp-like. But at this point in the night there is no denying the
menstrual /reproductive quality of this pain, it is in addition to the layers of other kinds of pain, that all
seem for that matter to be quite a bit worse in the last 48 or so odd hrs.. Can pain behave synergisticly?
It's very hard to untangle!! It's like these different pains are all competing with each other for my
attention and my back pains are like shooting throbs that pierce the diffuse but strong ache in the wider
area; they're really bad!

[04/05/14 - 2:30am] - Temp._99.1-99.2.
(NSAIDS? Yes.)
Diarrhea, lower back pain, abdominal pain, fatigue.

[04/06/14 - 7:36am] - Temp_98.9.
(NSAIDS? Yes.)
(Felt *somewhat* better last night & yesterday. Walked on treadmill briskly for 20-30min.,
started getting crampy pain in all the usual places about 15-20min. AFTER stopping (*not* during or
immediately after, so it was *not* exertional "runner's cramp") but they were mild-to-moderate and
somewhat short-lived (less than an hour). Muscles soreness over the last 3-or-so days kinda worse than
the already painful norm, esp. in legs and arms, but less fatigue and nausea also, so it's been easier to
deal with than it otherwise wouldda been. Breaking out in bad acne though, which sux. :( Back still
hurts but I suppose less than it has at its worst. Diarrhea still, but not esp. painful (just annoying,
inconvenient, and abnormal). Abdominal tenderness and bloating overlaid with transient mild twinging
crampiness in pelvic/abdominal region sending sharp throbbing twinges to lower-mid back. Have the
symptoms been debilitating today/yesterday? No. Does feeling this way (or worse) practically every
single day of my fucking life seriously negatively impact my QoL? Absolutely!! Are my symptoms
*often* truly debilitating? Lately yes, at least a couple days a week (these are the days for which I've
made no entry in this log, or minimally descriptive (sometimes post-hoc) entries, when there was too
much to have to describe & include, & I was too jacked up to face or bother even attempting to
describe it)).

[04/06/14 - 7:50pm] - Temp._99.7
(NSAIDS? Not in the last 12 hrs..]

[04/07/14 - 3:00am] - Temp._99.6
(NSAIDS? Yes; 1000mg. @ 1:00am, and 1000mg 7hrs. prior.)
(Ok, so apparently I forgot to knock on wood when I wrote yesterday about feeling 'somewhat'
better because I went to sleep around 8:30am, and was awakened around 11:45am in a profuse sweat(*)
with gnawing crampy colicky pains along with vague hunger (which is not to say appetite) so I made
myself eat 2 pkts. of granola bars and tried to go back to sleep, which took quite a while as it was hard
to get comfortable. I woke up later between 4:30-5:00 and felt like total shit. Back pain, body aches,
lack-of-appetite-bordering-on-nausea, diarrhea, crampy gnawing colicky abdominal pains, and my
temp. back up above 99.5 (symptoms seem to go from bad to worse when my temp. elevates above this
reading, or at least that seems to be the vague pattern that's emerging). Very little energy. Next to
impossible to concentrate on anything remotely requiring concentration. [...] ...It's a quarter to 4am
right now and my abdomen has been hurting since I woke up, and it's been worsening for the last
several hrs. so right now it's to the point where I'm having a really hard time concentrating on finishing
my french assignment! :(
(* - I've been forgetting to include the "sweats" in what I write down. They are more often
(though not always) at night, and they are just totally ridiculous. I had to get up and put a folded sheet
down where I'd utterly saturated the one on the bed, and when I flipped my pillow over it was damp on
the other side. I get the sweats a lot now, they seem to vaguely correspond to my level of active
symptoms, and so when my symptoms are active like they've been for days and weeks on end, I get
them nearly every night, for days and weeks on end. I assume it's probably relevant to include this.)

[04/07/14 - 10:45am] - Temp._99.4

[04/12/14 - 12:00pm] - Temp._99.2

[04/12/14 - 6:30pm] - Temp._100 (<---no surprise; I felt inexplicably and uncomfortably warm
@ the time, which is why I re-checked it.)
(NSAIDS? Yes.)
Horrible, awful liquid diarrhea (multiple 'sessions' over 3-4hrs., forming in my mind a single
'episode') w/ *extremely* painful cramping for hours upon waking (& not in the least little bit 'relieved'
by BM), continued diffuse pain and tenderness of abdomen throughout day (though slightly less
severely than in first several hours). Sacral back pain, fatigue, poor concentration. Hunger without
appetite, frequent urination. I took two of the 'antispasmodic' capsules from Dr. Bortman while the
diarrhea was at its worst, and although the diarrhea did resolve w/in about an hr. of taking them, I don't
know if this is attributable to the meds or if I was simply just 'done' w/ my 'business'... also, what did
*not* resolve along w/ the diarrhea was the great deal of pain I was in... 'twas somewhat lessened after
the active diarrhea ended but honestly not really all that much. Also: twinging/throbbing sharp pains
circumferentially around the torso (@ the level of the navel) throughout the day, mostly in the front of
the body and occasionally sending throbs and twinges downward to the pelvis and upward to the
bottom of the ribs. (* - Also, my symptoms were about the same yesterday, though I don't know what
my temp. was then as I didn't measure it.)
(...Now, I'm quite familiar w/ all of my personal signs & sensations, & honestly I'd say that this
is my period-pain starting to "ramp-up" (Ryan mentioned he took note the other day of the fact that I'd
gotten out the electrically heated 'period pad' which reminded me of the cramp-like throbbing twinge
on my left side that was keeping me awake one night, which I was trying to either relax or 'burn' out the
sensation of w/ the heat of the period-pad.); the twinging pain is in large part occurring geographically
as described above, but is composed also of a migratory aspect which seems to be jumping around at
sadistically-arbitrary-will from one place to the next with the one thing shared in common by all these
locations being that they are all precisely places that start twinging w/ usually sharper pain during and
immediately prior to my period. Being that my last period started on 3/19, that puts my next 'expected'
period onset just about exactly one week out. This upcoming week is the last week before Finals Week,
& in each of my three classes this week there will be a last, non-Final unit exam given, followed by 3
cumulative Finals scheduled for the immediately following Finals Week. So while I'm trying to
complete my remaining assignments this week, and having to decide how much time to spend
preparing for this week's exams vs next week's exams, I'll also be dealing with a full week of totally
disruptive, utterly defeating pre-menstrual symptoms that are now about as bad as many people's fullon
periods are at their worst, and when the week is out and I am overcome with the urge to sleep
continuously through the next one, in lieu of restorative downtime I will instead get to 'level up' my
character and (without the time even to do an 'equipment check') face the two-headed boss monster
born of the co-occurrence of Finals Week & My Period, where the stakes are even higher, handicaps are
increased, and things start to get really fun...
"Will there be blood?"
"Oh yes, yes, there will be blood..."
...After all the hard work I've put into this semester, despite all the pain & disruption of the ongoing
prison riot that has been taking place inside my body, I feel like the coincidental timing of my worst 2
menstrual weeks with the hardest most trying and stressful 2 weeks of the semester is so unfair since it
can quite literally take me out of the game for what adds up to days at a time (hours and days are the
absolute last thing I have to spare between now and the end of the term), and in a wholly unpredictable
manner... The variable, difficult-to-predict nature of the never-the-less inevitable disruption can take on
many forms, all equally potential; will it come in the form of a 3-day migraine? Or will you instead be
forced to the floor to writhe in pain two nights in a row. Or might it be a seemingly menstrually related
freak injury that forces you to contemplate purchasing crutches or bringing an awkward 'back pillow"
to class? Might it simply come in the form of 'only' moderate dysmennorheal uterine cramping that,
instead of being shock-inducingly painful, comes accompanied by utterly freakish and horrendously
painful cramping diarrhea that adds hours to your morning routine which of necessity must come from
time otherwise used for sleep, lowering your concentration and then turning right around and lowering
it further by causing continuous (presumably digestive) pain and discomfort? ("But hey at least the
uterine cramps were only a 7-8 and only lasted one night... oh yeah, and at least it's not Cancer.").
(And hey! Why not?) What about combinations of any or all of the above? How many of these
disruptive symptoms MIGHT there be *this* month? And *when* MIGHT they decide, lol, like Putin,
to "rear [their] head[s]"? How much advance notice will your body give you that "shit's aboutta get
real", and how are you to plan around it, once you feel it start to come on, when the unpredictability of
your symptoms casts an even pall of uncertainty across your entire upcoming schedule? Even as you
experience it beginning to happen, you know that these symptoms will continue to eat through & leave
you with vastly less time to accomplish things than you would otherwise have had in their absence (the
same can be said for energy), but *how* much less time will that actually be? And *which* slots of
time will be affected, & *what* had you originally planned on putting that time towards? The fact that
even low levels of risk and uncertainty require contingencies, and higher levels may require
contingencies within contingencies within contingencies, is exhausting to think about, let alone put into
constant action while enduring the bodily burden of active symptoms, and when the reason for the
uncertainty in the first place involves the nature and timing of highly variable intervals of great bodily
distress.)
I mean, either one of the two regrettably coinciding things (finals week, reproductive pain) is more
than enough of a challenge on its own. I just feel like fate and luck are totally fucking with me at the
moment; the cost of this disease just in terms of pain-already-endured and its attendant past opportunity
costs is already so high that having to watch its effects so very seriously threaten the outcomes of my
efforts and goals is just absolutely terrifying and enraging. If I had a definitive diagnosis, or at the very
least a concrete specific solid plan in place to *effectively* manage/control the unpredictable-butultimately-
expected pain IN THE SHORT-TERM, then maybe it wouldn't be freaking me out so badly
that the requirement to give hormonal treatment (ie, the IUD; I will not be taking Danzol or Lupron at
any time in the foreseeable future, t.y.v.m.) a 'final try' means that, unless the IUD is some incredible
side-effect free miracle pain cure (& honestly given it's mode of action, I'd think the pain-control from
hormonal manipulation would have to be BETTER than that likely obtainable with surgery in order to
justify it's continued use in lieu of surgery), it will likely be another 6mo. before surgical treatment is
commenced; (2wks. sexual abstention, +3mo. trial of IUD, +a recommended minimum of 1 mo. postdiscontinuation
interval prior to surgery, +however long it takes to schedule and prep. for surgery... )
...It's like a minimum of 5mo. total, and probably closer to 6mo., but in the meantime, like I said, if the
IUD is ultimately not able to provide *desperately* needed symptom relief, or provides an
unsatisfactory level of relief, or an unsatisfactory level of side-effects, then I'm left where I started,
which is an unacceptable position to be in for even 6 more months, because in the meantime I still have
shit in my life like Finals, and job-hunting, & planning a wedding, and planning my academic schedule
for the summer, and the lack of diagnosis is significant, and this significance should not be minimized
by looking at it from a strictly medical standpoint; if treatment is 'very effective' in the absence of
diagnosis, and major differential diagnoses have been ruled out, then I 'get' that the clinical utility of
definitive diagnosis may be relatively low and a moot point, as the general diagnosis is confidently
suspected and symptoms are being controlled... which might be all fine and well and true, but in the
broader social context diagnosis carries potentially broader social meaning. People want their
diagnoses!! Furthermore, the patient has (and I, as a patient, have) a legitimate desire to know with
robust detail what, *exactly*, is going on within their own body, to know that whatever it is, it is being
assessed w/ that same level of detail by those Drs. whom they have chosen to trust enough to allow to
make treatment decisions; They want to know how their disease would be judged during surgical
staging, if possible they want the disease taken out, not suppressed indefinitely into dormancy (or
partial dormancy); women w/ symptoms throughout their cycle would probably want (I would, and do)
to know if menstrual suppression will eliminate pain that is peri-menstrual or continuous...
...and so here I am, and as I contemplate the "medical treatment options", they all still feel (to me) like
little more than temporal barriers to surgery, given their generally temporary effect on symptoms rather
than underlying disease, their potentially side-effects laden profile, and ongoing monetary cost, and the
feeling that I will have to wait this long to see if I am satisfactorily relieved of pain (if not disease
itself), or to even just determine definitively whether endometriosis is indeed what ails me, it just feels
unbearably like an unnecessary delay & time-barrier to not just potentially more effective, but
potentially curative surgical resection of disease, and determination of extent of involvement of
surrounding organs. And I have no plan (other than copious administration of *utterly useless*
stomach-burning NSAIDS) in place to deal with the pain this 'suspected' disease can and does throw @
me, both in moments of acute super-intensity and on the more chronic level 2-4wks/mo.. I have no
good way of confidently indicating what's wrong with me to anyone or explaining the nature of its
debilitating effects on my functioning & productivity, or handling the pain of each day on my own
without falling ever increasingly behind in my life (lol, I thought people w/ "IBS" were s'posed to
*eliminate* sources of stress in their lives!!?))
I mean if, like I said, I knew what the plan was to control and minimize the crazy effects on my life that
my crazy symptoms are currently having and can be expected to continue to have at least until my body
adjusts and the levonorgestrel starts taking away the pain, then that would one thing. But I don't feel
like anyone has really communicated about this to me & so I don't really feel like there's much of a
plan except 'expectant waiting' & re-evaluation in 3.5 months, and herein to my mind lies the problem;
not only will I still be vulnerable to the continued effects of the disease in the absence of an adequate
therapeutic effect of the hormone, there are apparently no contingencies in place for instances over that
3-4 mo. period of failure (in terms of pain) of that treatment, taking into consideration the costs to me
of such failures when & if they occur. And related to this for me is the issue of judging the
effectiveness of the hormonal treatment, when I don't know exactly what is even causing my pain and
discomfort and various other symptoms like fatigue and diarrhea and urinary frequency and lowerback/
upper-leg pain and generalized abdominal bloating and tenderness. At what point can the
suppressive hormonal therapy be said to be "effective"? How are we to define this word for our
purposes? I know what 'effective' generally means in the scientific medico-legal sense, which is
"producing an effect of sufficiently robust magnitude as to not be statistically ascribable to chance".
This may be adequate for FDA regulatory purposes, or for reporting the results of your study in the
journals, but it is not a useful definition for guiding treatment decisions that involve making
discriminating choices among very different treatment options, especially when they are presented to
you in triggered-series ("Attempt treatment A, if A is not effective initiate treatment B, and failing that
move on to options C, D, & E, in that order." <---this kind of formula is very often the only rational
way to practice medicine, and really is best practice, but, its appropriate application requires a clear
definition of the standards by which each treatment and its outcome will be judged and this is
especially important when the available treatments are incomparable in terms of their manner of effect
and the first and second-line treatments must be tried in the clinical setting of no confirmed diagnosis,
making their 'effect' difficult to judge and necessary to qualify.

[04/13/14 - 11:30am] - Temp._98.7 (<---Holy shit this is like my first nearly normal reading in over a
month! However...)
Diarrhea (
[04/13/14 - 3:21pm] - Temp._99.8

(NSAIDS? Not in last 10hrs.)
Diarrhea, backache, crampy abdominal tenderness, low-energy and concentration. Sweaty
armpits. Took two 'antispasmodic' capsules after first diarrheal BM, and it might be the reason I haven't
been continually running to the bathroom for more diarrhea, so that's encouraging. If calming the
diarrhea means calming some of the pain often associated with it, then that will be a great help in
recognizing other kinds of pain as it occurs and distinguishing which pain is gastrointestinal (/diarrheal)
in nature, and which is directly reproductive. Not that it'll ever be clear cut and straightforward, but
quieting the diarrhea and the pain it seems to directly cause should help at least somewhat to clarify
what's what.

[04/14/14 - 12:00pm] - Temp._99.7
Diarrhea, cramps, abdominal pain, back pain.

[04/15/14 - 5:00pm] - Temp._99.5-99.6
Diarrhea (very liquid), abdominal/pelvic pain, sharp cramps, back pain, messed up appetite.

4/17/14 - bad cramps all day, diarrhea, started very lightly spotting (pussy blood), backache really bad
too, same as yesterday (except yesterday had a bad nearly migrainous headache), and day before...
monday was bad but ever so slightly less so.
Using heating pad, taking round-the-clock NSAIDs, dicyclomine capsules as needed; level of
functionality=very poor.

4/19/14 = bad cramps all day, liquid diarrhea, (bleeding started on the 18th, hormonal headache from
4/17-19/14), bad lower backache, tenderness and intermittant pain in upper/inner thigh/groin area,
cramps and backpain seemed to be referring pain upwards to right shoulder/shoulder-blade/armpit area,
increased urinary frequency.
Using heating pad, taking round-the-clock NSAIDs, dicyclomine capsules as needed; level of
functionality=very poor. (missed Friday's exam on the 18th, and had little to give to studying on the
afternoon & evening of Sat. the 19th.)

4/20/14 - cramps. diarrhea, backache, urinary freq., generalized myalgic soreness,
Using heating pad, taking round-the-clock NSAIDs, dicyclomine capsules as needed; level of
functionality=poor.

[05/03/14 - 3:15am] -
Bad constant pelvic/abdominal/lower-back pain all day today (and yesterday, but especially
today). Pretty debillitating, actually. Moved UofM appt. up (or is it 'back'?) to this upcoming Tues.
(5/6), and hopefully I'll get through the weekend and have the appt., and have the appt. go well and
maybe start to see some desperately-needed progress on that front. Have been having lots of what
seem to be hormonally-triggered migraines lately too. Diarhhea. Urinary frequency. Fatigue (but much
of this is related to resuming my downward titration of my Adderall dosage). Mood overall pretty good
this week, all things considered.

[05/03/14 - 4:00om] - Temp._99.1-99.2
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