So good to be home... So good in fact that updating the
blog has been on my to-do list for several days now... But I just found myself
busy doing so many other things that I have wanted or needed to do that this
kept slipping further and further down the list. Lol.
But right now I can't sleep (stupid steroids) so while my boys are in
bed I will give ya a quick update :)
Here is a quick run down of what I/we have been up to for
the past few days:
Finally got home from the hospital and the pharmacy around 745pm on Friday
night. Just in time to catch Scotty
before his bedtime!!! :). Best goodnight kiss EVER!!!
Saturday morning my MIL watched Scotty while John drove
me on a bunch of errands that had to be done immediately (bank to deposit
multiple checks that had come in for me over the past 3 weeks), the grocery
store and Costco so I could shop for my GVHD2 diet (very restrictive and needed
options since I am only allowed to eat about 1/8 of the things that would
normally be dinners or in out pantry/fridge on a regular basis. We got me well stocked and I feel like I have
good options (even if they are SUPER boring).
I have been trying to get creative and try things that I might not have
otherwise eaten...but it's really challenging without being able to use any
good spices! :( lol.
We quickly ran to Target and Kohls as well on Sat AM so
that I could get some Rubbermaid storage containers (more on this below) and a
George Formman grill with removable plates (since I am eating a TON of grilled
chicken, turkey, and lean pork chops.
The Foreman grill has been awesome!
:)
On Sunday our family photographer came over and did some
family photos for is (yay) and also got some pictures of Scotty for his "1
yr. pics". It made me SO happy to know that despite all the craziness in
the past month, we were able to keep this appt and get some family photos since
it had been a while and nowadays I just simply want to make memories with my
boys and the photos help me realize that even though we were physically
separated for 17 days, they are where I am "home" in this crazy
little world! :)
We watched the Broncos game on Sunday and then Sunday
night I got to get my boys ready for their Mondays (felt so grounding and
centering to get back to my routine).
Monday and Tuesday were BUSY with appts all over town
which I drove myself to (downtown to the clinic twice, social security office,
DMV, 3 trips to different pharmacies, more little errands that I had needed to do
all month and trying to get more info on my clinic/doc appt schedule for later
in the week so I can make other appts and get my calendar ready for
everything. This has been the most
challenging things for me because I have to take meds or check my glucose/administer
insulin, plan very specific meals, and I am LITERALLY taking a med or checking
my glucose EVERY HR from 6am-2pm and then doing my home IV from 3-5, more meds
at 6, dinner and more meds at 7 and then a 2 hr break before my 9pm meds and
then nighttime/sleeping meds. This makes
it a HUGE challenge to run any sort of errand or attend an appt because I have
to plan even further ahead so I can bring my meds, glucometer,
insulin/syringes/etc, pre--cooked & planned meals, and all my other stuff with me if I leave the
house for more than about 45 mins. It's
NUTS! I am a dang good organizer and
this has been a massive challenge/undertaking even with my "mad organizational
skills"! :). Lol
Another challenge I am having is that the steroids have
all but destroyed my "proximal muscles" which makes me SO weak. I can't get up off a chair or the couch by
myself without bracing on something. It
takes me 5 times as long to go up and down stairs because I have to put so much
effort into lifting my legs and I can't carry anything up and down the stairs
because I have to use both hands on the railing to balance and help pull myself
up! It is SO incredible frustrating not
to be able to run upstairs and grab something, put something away, or simply
move around and get stuff done the way I used to. Doc promised me it will get better as I
continue to taper down on my steroid, but it is beyond annoying/frustrating to
have to put that much effort into something that I took for granted. If I need to go upstairs for any reason, I
usually have to put on a backpack so I can carry up my phone, iPad, and what
ever I need to take up there with me if I am gonna be up there for more than 5
mins since it takes me that long just to get there. I am like a little turtle with my backpack
moving slowly and steadily up and down the stairs in my own house... It cracks
me up thinking about it but is also such a pain in the rear! Lol. I now have a whole new appreciation for
other patients/people who struggle with mobility and strength/coordination
issues!!!!!!
So, the Rubbermaid tubs that mentioned above are
literally about to take over an entire room of our house as I go through my
wardrobe from the past 10 years and get ready to consign stuff. 1 yr ago I had just had Scotty and weighed
115 lbs more than I do today... And for the past 8 years before that, I had
been wearing sizes that I would rather not mention here. I literally don't have
ANY fall/winter clothes that fit me. I
need an entire new wardrobe in a size that fits (and I mean, doesn't FALL off
of me or make me look like I am back in the late 1990s/very early 2000s.. the
last time I weighed what I do now). I
didn't realize how much stuff I had accumulated in the past 10 yrs and I need
to get rid if it so I can but clothes that fit (so I don't look like a hot mess
or a kid dressing up in their olders siblings/parents clothes! Lol. I even need new undies, PJs, fall winter
jacket, jeans, shirts, sweaters, etc.
It's kind of a massive undertaking but I want to do it in an organized
way so that hopefully I can consign and give away the pieces of my old wardrobe
that are still good (just simply don't fit me)... And then shop smartly (sales,
basic separates, etc for my new wardrobe).
This is hard for me since everyone who knows me well is aware that I am
the absolute furthest thing from being "fashionable" or having any
sense of style, really! If there is
anyone out there who has suggestions and or wants to help me out, I would greatly
appreciate any/all advice in how I should be finding/building this new wardrobe
of mine so that I am wearing clothes that for correctly (esp since my
body/shape has changed so drastically in the past 2 years...I don't even know
how things are supposed to fit properly).
I feel like I need to be on an episode of "what not to wear"
with Clinton and Stacy. (But I don't
have time to shop when I am taking meds and going to appts ever freaking hr of
the day! LOL. So in the meantime, if ya see me in
ill-fitting clothes, walking super slow and I look like I love the 90's fashion
trends still...please be kind, I am working on it (as fast as I can with how
slow I move these days! ;). lol
Just another fun thing to mention is that I feeling so
blessed that I am able to enjoy these last beautiful fall days outside the
hospital. Fall is my absolute favorite
season of the year and just being able to see the leaves changing/falling and
hearing/smelling the leaves crunch underfoot when I walk anywhere makes my
heart SING with gratitude that I get to experience this at home this year and
not be in a tiny little hospital room for weeks as my favorite few weeks of the
fall season swing right past us! I am
also SUPER excited about the holidays coming up and spending time with family/friends...
Making purposeful memories and just savoring those moments that we all take for
granted so often when life gets busy and we get caught up in the "hustle
and bustle". This past year has
really taught me a lot about perspective, slowing down, and just being grateful
for what I do have which is an AMAZING support system, a team of medical
providers who have saved my life 3 times now in the past 8 months, and the most
beautiful and amazing family/marriage I could EVER ask for!!!!
Love, Chellie
No comments:
Post a Comment