Thanks for being in touch the past few days. Sorry I haven\’t been
responsive. I\’ve been doing my impression of an ostrich with my head
in the sand, ignoring the outside world.

My appointment on Monday at Johns Hopkins with the neurosurgeon did
not go at all like I expected. It turns out that the three doctors
who looked at my MRIs over the past fifteen months were wrong: I don\’t
have a bone spur on my coccyx (tailbone).

They thought that because my coccyx is painful to touch, is longer
than most peoples, and is slightly more curved than most peoples.
When looking at my old tests, there was, indeed, a big irregularity
right off my coccyx — but its not a bone spur.

The MRI I had last week, as well as the X-rays Hopkins did on Monday
show something else; two somethings else, actually, both unrelated to
the other. First, the mystery off the coccyx, is not actually
attached to the bone as the first three doctors thought, but is
located between the coccyx and the uterus. This area is the
rectouterine pouch, though my understanding of it is that it is less
like an actual pouch and more like a space created by being surrounded
by actual pouches (in this case, the rectum, vagina, uterus, and small
intestine).

My rectouterine pouch has filled with a lot of fluid. A small amount
of fluid is common in menstruating women; menstrual blood that doesn\’t
make it out of the uterus into the vagina can overflow into the pouch,
but in healthy women, the amount of blood is small and it quickly
reabsorbs. The amount of fluid in my pouch indicates something else:
perhaps a burst ovarian cyst or endometriosis. We don\’t know what
yet; more tests are needed.

The second thing the doctors at Hopkins found is in my left hip, on
the inside of my pubis bone. On the right side, the interior is
smooth, but on the left side, the bone is very jagged. That could be
due to a few things as well: osteonecrosis (literally \”bone death\”)
from an improperly administered cortisone steroid injection, or a form
of arthritis. Again, we don\’t know what yet; more tests are needed.

In the next two weeks I\’m going to be having a CT scan with a contrast
material and then a bone marrow scan. Depending on the results of
those, I\’ll then be having a laparoscopy.

I\’m bummed out, which is why I\’ve been doing an ostrich impression.
After the bone spur was \”found\” in August of 2006, I let myself have
hope. I started looking forward to having it taken out, and preparing
myself for a life without being so gimpy. I worked hard at school and
worked with the state rehab program. I\’ve been saving money. I had
put together long term career plans (as required by the state rehab
program, but I actually had myself believing in it).

The doctors at Hopkins were very nice about it, but they were also
honest: the two things they found have nothing to do with each other,
and regardless of the causes of them, the conditions will always be
there, will always be painful, and will only grow worse. In the case
of the fluid, it can be removed, but I\’ve had a history of irregular
cycles and menstrual pain since the age of 13, so whatever caused it
will cause it to come back.

I used to feel empowered when I would get a diagnosis, but over the
past six years, that has been broken out of me. I used to feel like
knowing what I have would allow me to learn about it so I could fight
it, but that hasn\’t been the case. I\’ve known about the FMS/ME for
five years and nothing has changed. I\’ve known about the narcolepsy
for a year and a half and nothing has changed. Etc. I gain more
insight as to why I feel sick but that only leaves me feeling more
frustrated about different things. I\’ve been trying to be more
responsible in the past six months, juggling \”work,\” school, and
gimpiness, and perhaps it has all caught up with me seeing as I\’m now
stuck with three weeks of bed rest on the doctor\’s orders. But if it
has taken me three years to get thirty college credits, I\’m working
but still living below the poverty line, I rarely get to see the
people I actually care about, and my health is deteriorating, is this
all worth it? I don\’t know.