So it's been quite a while since I updated the
blog...sorry about this :). As John mentioned earlier today...you need to
update it, you have loyal readers. To
the loyal readers out here...I apologize, the holidays got away from me and we
just celebrated John's birthday today.
We were able to spend 4 days down in Pagosa Springs with
my parents a their cabin for Christmas and it was awesome! Lots of relaxing by the fire, reading
books, playing board games, watching
episodes of Breaking Bad (we just started watching the series), and eating too
much. :)
We got back home and enjoyed New Years here at home...in
bed by 9:30pm :). Since I cannot be in crowded public places (and we are that
old married couple with a kid)... There was no crazy parting for us on
NYE. We were happy to go to bed early
and sober and wake up the next day rested and ready for 2014.
Hoping that 2014 is kinder and gentler to our family than
2013...certainly can only improve from here! :). It is seriously so crazy to me to think that
next month marks the 1 yr. anniversary of my initial diagnosis and my first
bone marrow biopsy. In some ways it
seems like it has been much longer than a year...and in other ways time has
flown by and I barely remember things that have happened in the past 12 months
(maybe that is my mind's way of protecting me from the "trauma/drama"
of certain events in the first few months of 2013?!? :)
Recent clinic appointments have been interesting. Since I tested positive for Norovirus in late
November, I have had to be seen in the "isolation" room at the clinic
when I go in for my appointments. These
rooms are reserved specifically for patients who are on "contact
precautions" and the docs/nurses had to gown/glove/mask up when they came
in the room each time. As of late last week,
we re-tested for Norovirus and I am negative now!!! This is great news as my body seems to have
fought off the virus successfully after we were able to decrease my
immunosupression and give my system a chance to recover from it! Not so fun news is that I am still
sporadically experiencing some GI issues and this has my transplant doc a
little bit stumped because it would normally indicate that I am having a GVHD
"flare up" but all of my blood counts related to GVHD are good and
don't coincide with what Dr. Nash normally sees with someone who is
experiencing GVHD. So, last week he
decided to test me for 3 other viruses that tend to attack the GI system...I
should get results from the adenovirus, rotavirus, and c-diff tests latest this
week when I visit the clinic on Thursday.
In other family news, long story...but we have lost our
amazing daycare provider for Scotty (the licensed in-home provider who lives in
the house behind us). We have had to
scramble to find temporary daycare and can't thank my MIL enough for agreeing
to come up to Denver for several days in a row for the next 2 weeks while we
try to find alternative child are arrangements.
This is especially difficult because I'm still so immunosuppressed and
we are really nervous to enroll Scotty in a different daycare. He had been going to our neighbors for the
last yr. and he has not been sick or needed to visit the pediatrician for an
illness in his entire year while he was in her care. She was aware of my special needs and was SO
careful to keep Scotty away from any of the other children in her care who were
sick. We are really nervous that any
other daycare provider or daycare center is going to be a "germ
factory" and if/when Scotty gets sick then I will most likely get ill and
this could be really scary. There is
definitely a VERY nasty flu going around here in Denver (and the whole country
for that matter)...and last week when I was in the clinic for my appt with Dr.
Nash he stressed how important it is for me to avoid anyone and any place where
people are sick (daycare centers being one of them!). :(
Anyone who wants to send prayers for us, we are
hoping/praying that Scotty will be able to return to our neighbor for daycare
ASAP (not even sure if this is possible, but sure hope it is). Everything is so up in the air right
now...funny how the lesson of being flexible and "going with the
flow" keeps coming up for me everytime I start to feel like I am in
control again. "Okay God, I get
it"...this is a lesson I am needing learn and an experience I need to keep
having apparently because these twists (the dx, GVHD, Norovirus, and now the
daycare predicament all seem to come out of nowhere and just when I am getting
comfortable and feeling like things are getting good (in control) again! LOL.
As my cousin, Kristi, reminds me (with a quote from Finding Nemo), I
just have to keep swimming and things will work out (although I must admit that
the daycare situation has me rather stressed out because it involves Scotty and
isn't just a health issue that I can deal with on my own, which I tend to
handle better). I am a typical
"momma bear" in the way that anything that affects my son (throwing
off his routine, etc...) makes me upset and I want to "fix" it
ASAP! Lol
To end on a positive note, I continue to feel stronger
(although it is still difficult to get up the stairs due to my hip muscle
atrophy from the steroids). I am able to
walk around the neighborhood, do some limited time on our elliptical machine,
and get up from a chair with minimal support (still have to support myself with
my hands, but it's much better than it was 2 months ago!). I am starting to
sleep better (thank goodness!) and I am a bit less tired during the day
(stopping the steroids was rough in a way because as weird as it sounds, they
gave me a boost in energy and coming off of them I started feeling the fatigue
associated with my body's recovery from the recent Norovirus and even the GVHD
from October (Dr. Nash said it will take my body 3-4 months to allow my GI system
to regenerate all the cells it needs to function "normally" again
once we get things under control with the immunosupression meds. So, sleeping a little better,a little less
fatigue and being able to move around a bit more easy have all been welcome changes
over the past few weeks! Yay for
progress in the right direction!
-Chellie
