that's how i feel. not incomplete, but not quite whole
either. i can look in the mirror and see a whole person, but the mirror doesn't reflect what happens inside.
inside there are shards, pieces of me that don't quite connect.
i've lost control over the one thing i truly own--the body that carries me through life.
in april 1999 after several years of unexplained symptoms and countless
visits to specialists, i was diagnosed with Fibromyalgia Syndrome (FMS or fibro). then, in may 2003, after a year
of new and different unexplained symptoms, i was given a likely diagnosis of Endometriosis (endo).
laproscopic surgery performed on july 3, 2003 proved that hypothesis wrong. instead,
surgeons found and removed extensive adhesions (scar tissue) that were essentially pasting my internal organs together.
so now I study pelvic adhesive disease-the term used for recurrent adhesions.
after the recuperation time for the surgery, and I was still having pain, I was referred to
a dyspaurenia expert who diagnosed pudendal myalgia (august 2003). this is basically irritation of the pudendal nerve
which feeds, well, just about everything 'down there'. the irritation caused constant muscle spasm, which in turn caused
the pain.
this website will chronicle my journey through my eyes.
*While there is no content that could be considered
lewd, please note that journal entries and other website text deal with issues that may not be suitable for
children. All of the views expressed on this website and in this daily journal are my own. All content is copyright
Jennifer Guise Schladen and may not be reproduced without express written permission.
sunday, june 22, 2003
things moving quickly now...
went to see the doc again on thursday, and everything has been moved up
because of the pain i've been experiencing.
surgery is set for july 3rd, and in the meantime i'm having a colonoscopy this wednesday, june 25th.
he's sending me for that to see if they can find any endometrial tissue in my bowel--if so, i'll have the major surgery (laparotomy)
rather than the more minor (laproscopy).
i'm off work until after recovery from the surgery, and applied for short term disability. the
pain is severe daily, hurts to pee, bowel movements have gone missing (and being coaxed along by laxatives), and I get nauseous
every time I eat. the endometriosis diet works--i've lost about 15 pounds in the last month or so--but i don't recommend
it.
i also wrote a note to friends asking for help. that was tough. i really want the house
to be more organized and clean before the surgery, though, and i'm not able to do much. it was embarrassing to ask for
help, even though most of my friends have responded and are more than happy to do so. i just knew i couldn't do it alone,
or push jon to do it all, and couldn't wait for people to offer.
i'm scared about what is coming up, but also looking forward to it because it should help how
i feel. i know that tons of other women have gone through all of this, but it's still frightening. sometimes i
just wish i were 'normal', get into this 'why me?' funk--but most of the time i try to be positive about the whole thing.
"that which does not kill you only makes you stronger" hmmm, i'm not sure that really applies to chronic illness--instead
you feel weaker and smaller and less than human most of the time, and spend the rest of the time talking yourself out of it.
welcome to day 5 of moderate to severe cramping---argh!
I left work on Thursday early with cramps that weren't being helped by my meds. Friday, they
were still serious--spent most of the day on pain meds, and I knew when they were wearing off by the return of the vise grip
feeling in my abdomen.
Saturday and Sunday--same story. Typically woke up feeling mostly okay, but pain had woken me
up intermittently through the night. I was able to do small things around the house, but feeling very fatigued and it
took me hours with rests to do the smallest thing.
So now it's Monday morning and I'm wondering what to do about work. I have a chiropractor appt.
this morning, so need to get out and about anyway, so I'm thinking I will go and give it a try. If I miss another day,
I'll have to start thinking about preparing to use short term disability benefits, and I'm just not sure I'm up to taking
on yet another battle.
I just keep hoping that this cramping means that my period will come, and that's a positive, as it
means I can go ahead and start scheduling tests and my surgery. So, if this all means that it's the beginning of the
end (treatment) I can deal with it. If I'm like this for a few weeks with no period, then I don't know what I'll do!
yesterday my husband and i visited a dr. at johns hopkins--dr. nikos
vlahos, a reproductive endocrinologist.
i had prepared all weekend for the visit: studied info on endo, lupron, and surgery,
and read books regarding guiding your own health care. i was ready for whatever he said, and determined to have 'ammo'
against the treatments that i did not feel comfortable pursuing.
while i'm glad i've taken the time to educate myself, it wasn't necessarily needed yesterday!
after a thorough interview and an exam, the dr. confirmed what we thought--endo. additionally,
he found a small cyst on my left ovary that he suspects is an endometrioma.
and let me say--this is by far the best experience i've had thus far with a doctor! he
was kind, concerned, knowledgeable, funny, and caring. he apologized when something he did hurt me. he invited
me to participate in the exam rather than lie there and be still. when he did the vaginal ultrasound, he asked me to
prop up on my elbows so he could show me what he saw. final words: cloth gown and warmed speculum!
he also invited my husband into the exam room, and involved him in the process as well.
the treatment plan is this: blood test at my next menstruation, dye test to check my
tubes 2 days after menstruation, then laproscopic surgery. once he sees the blood test results, he'll determine if we'll
need any help for regular ovulation, then for the next 6-8 months we will be 'aggressively' trying to conceive.
after so many years of assuming that i would not be able to have a child (not based on medical
evidence, mind you, but on my own fears), i feel on cloud nine having this chance. i'm so excited that it is possible
that i'll be pregnant, or even a mom already, by this time next year!
i feel relieved, excited, a little nervous, but mostly, i feel well cared for and not at all
apprehensive about my care. i know it is likely not nearly the end of my journey with endo, but i feel it is a good
beginning.
i've been busy! spent this morning filling out my medical
history form for an appt. with a reproductive endocrinologist at Johns Hopkins tomorrow afternoon. i'm eager to see
if this 2nd opinion is the same as my gyn.
also starting 'endo support circles', a way that women with endo can contact each other for
support, send encouragement, etc. can't wait to see if the concept works.
pain has increased the last few days. still having nausea with just about every meal,
and even when I don't get nauseous, I feel like the alien baby is hatching in my intestines (mostly left side) an hour
or two after eating--pain, weird gurgly feeling. in fact, i had my husband put his hand on that area to feel it as if
he were waiting for a baby to kick--and he felt the weird gurgly thing. my weight is dropping because, like Pavlov's
dogs, the thought of food bring on the remembrance of nausea and my hunger dissipates.
also some sharp pains on right side, just above pelvic bone that come and go. pains in
my hips and legs. increased fibro symptoms last few days.
so, it's overcast AGAIN in Delaware today! have some cleaning to do, and better get it
done while i still have the energy.
i've been working so hard on trying to direct my treatment and get support from others with endo, that i never seem to
have the time to come here. I will, however, make a vow to post at least weekly if not more often.
my birthday camping trip was great! my friends lured me from the campsite, then decorated it and got a cake, and
i just felt (sappy moment approaching) so loved and cared for! it was just what i needed, and i need to make the time
tomorrow morning to sit down and write to tell them that.
then, saturday night, the pain-free fairy must have been smiling down on me because i was able to have the first pain-free
intercourse with my husband in months. it was wonderful, and we just kept going because who knows how long that lasts!
he is so supportive about this particular side effect; always tells me that it's ok, that intercourse isn't that important,
that we can find creative ways to be intimate. i tell him that I like intercourse, dammit, and it's not ok with me!
i know he understands my frustration, and the love that he gives me is so incredible, i get nervous and have to make a sarcastic
joke like that. i do like intercourse though, crave it in fact, and it is a real loss in our sex life.
unfortunately, i've been left with a nasty souvenir--systemic poison ivy. unlike contact poison ivy rashes, this
comes from inhaling the smoke of the burning oil. i have little rashes popping out all over my body, and now my eyes
burn and itch--gawd, i hope they're just tired and not affected too. went to the doctor today for steroids, which stop
the systemic spread, so hopefully they'll start working and these little blisters all over my body will stop appearing.
all for tonight (or should i say this morning--a bit o' insomnia)
