Hey Blog World! Sorry I went on a 2 + week hiatus! Went to a
family wedding this past weekend and had little time in between to commit to
finishing my blog post. BUT all that aside, I’m doing pretty well!
Yesterday I took my
first shot at home… I didn’t even feel it!! I numbed it up
for about a minute, cleaned the area with an alcohol wipe and then did it!! Of course,
that was not without counting myself down and saying a couple of times that “I
can’t do it” but pretty darn proud of myself at the moment :D
Another reason I have been avoiding Me, Myself and Still’s Disease is because of big life decisions I’ve had to make… Yesterday, for health reasons, I gave my two weeks notice. My job’s environment of high level stress
has intensified over the first weeks of summer camp and I believe the cause (in
significant part) of my inflammatory rash/ systemic reaction. After speaking
with my parents who have known every aspect of my still’s, they suggested I
come live at home the rest of the summer
before returning to school. So! I’ll be
making that move in the beginning of
July.
It’s been a bumpy road to that decision. Part of me thinks I’m giving up by moving home and the other part of me is thankful that I
have parents who can support me while I get myself better. On the bright side though, when my mom, my
toughest critic, saw me over the weekend she said that I’ve definitely lost weight! Huzzah! My mom
credits it to the 100% green coffee bean
extract pills I’ve been taking… I don’t know if that’s all it because I’ve
also significantly decreased my carb intake but I’ll take it!! Haha
I want to keep yall in the know and so, here’s the blog post
I began to write last week but failed to finish…
Aka Self Destruct
This has been a pretty tough
week. I’ll admit there was a bit of crying and quite a bit of contemplating…
First off, I think I should mention that my main rheumatologist “Dr. S” (who I
loved) finished her work at my hospital.
Thus I have been (reluctantly) seeing a
new rheumatologist “Dr. H”… and frankly, I’m not on board with her yet. I know it’s partially a doctor-patient trust
thing we have to build… but it’s also her body language and the way she speaks
about Still’s disease that tells me she’s less experienced. I get the feeling
she’s trying to teach ME about Still’s disease… as if I haven’t lived with it
for 5 years!
But I digress ;) Here’s a short run down of the past week’s happenings:
Sunday – last Kineret shot, feeling pretty
good
Monday – feeling a little less loose/ a
little achy
Tuesday – feeling the same as Monday. first Humira shot. Now it’s important
that I tell you how it felt. Not. That.
Bad. Sure it hurts but it’s literally over
in a matter of seconds. What I told (and tell) myself was this; I’ve been
giving shots to myself for the past 5 years. I am Titanium. Remember?! :D The
worst part isn’t the needle but the last push of the medication.
After watching youtube, reading posts about the different
shots and how they hurt then talking with the health nurse as I went through
the Humira training… I just want to say, it is utterly silly that people try to
console you by telling you that it’s the preservatives that hurt! …Ok, so what
now?! Are you going to separate out the preservatives for me?! Hahaha
Wednesday am – sore throat pm- sore throat
and rashes
Thursday am- rashes, sore throat, achy
feeling in belly pm- rashes
Friday – call Dr. H, visit Dr. H where she
prescribes a low dose of prednisone for my evident systemic reaction aka rash
Saturday - second day of prednisone, rashes
look blander and feeling well
Sunday – rashes a little redder
Today is Monday and I don’t think the prednisone is working.
As I drove home from work I wondered what my body was thinking… then the word
came to me: Self Destruct
… Since writing that
much…
Last week it was off and on rash but the sore throat went away and there has been no significant joint pain, fevers or any other
external tangible reaction. The prednisone began to keep the rashes at bay
until promptly 6 o’clock when it was time to take it again… which brings me
back to yesterday.
I took pictures of my worst rash day last week for you all
to see and thus am making my blog debut! Enjoy! Hahaha
Seriously though, I know I’ve made the right decision to
separate from my job and get a plan together for my future. It’s comforting to
know that I have parents who understand the severity of this disease and
support me. So in love, I dedicate this blog to my parents :)
