Self Destruct and then some

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 :)