Thursday, December 19, 2013

while my blog may have been quiet for the past couple months, our lives certainly haven't been.  from moving to a new apartment, to finishing Fall semester in school, to a trip home to Michigan, John and I have been anything but void of a constant To Do list.  but here we are, moved into our new place (still trying to get settled and make it feel like home, however), finals taken and research papers written, and back from snowy Michigan.  we both thrive with routine, so when you throw a bunch of out-of-the-ordinary stuff at as, we kinda flip.  these next few weeks will be spent trying to get our mo-jo back.

my RA certainly hasn't been silent either.  actually, I have had more changes in treatment the past month or so than in any other stage of this disease process.  and the changes have been big.  and painful.  and involve needles.

about six weeks ago Dr. J.'s nurse called to inform me that Dr. J. wasn't happy with what he saw in my most recent blood work, meaning the antibody levels were still way too high.  I wasn't exactly surprised because my fingers were looking sausage-like and the morning stiffness was still making it difficult to comb my hair.  then the bomb was dropped.  we're moving on to a little drug called Humira.  [that was an RA joke. everyone with the disease knows about Humira and gives a little shudder when it's mentioned.]  

Humira is a self-injected medication given every other week.  it comes in a "pen" where the needle hides until you push a button and it comes screaming out of its holster and into your thigh or stomach.  then you hold the pen still for 5-10 seconds while something that manages to have both a cold and a burning sensation oozes into your body.  both the high speed needle and the actual medication hurt like hell.  just going to give it to you straight, because I'm not in the mood to sugar coat anything.  

for my first injection, John and I had to go into Dr. J.'s office for training.  the nurse talked a lot about the drug, the side effects, the administration, and the like, but I was too busy shaking like a leaf to listen.  I'm not usually such a wimp, but the whole situation was just so surreal and I was waiting for the candid camera crew to jump out and tell me this whole RA thing was just a farce.  an elaborate joke, I know, but I feel like that show could totally pull it off.

anyways, after the nurse calmly told me how to stab myself with a needle, the spotlight was on me.  first I pulled up my shirt and grabbed some muffin top, but after 10 minutes of crying and wimping out in that position, I opted to pull down my pants and sit in my unders with the pen poised above my thigh.  the leg seemed a little less vulnerable.  more tears, more calm words from the nurse, amazing support from my husband, more wimpy Julie.  I didn't have a stopwatch going, but I'm pretty sure we sat like that for another 20 minutes while I worked up the nerve to push the button of doom.  I finally did, I kept crying, I kept my pants down and focused my attention on snot control instead, then I had to wait in the lobby for 30 minutes to make sure my leg didn't fall off or something.  the leg, I'm happy to report, is still attached.  

John has continued his role as amazing husband and now gives me the injections.  they still hurt and I still cry, but at least I don't have to be responsible for keeping my hand steady for 5-10 seconds.  

yes, the injections hurt and the medication feels a little like a volcano has erupted in my veins, but the reason I cry is mostly emotional.  these injections are such a harsh reminder of what my life is now because of RA.  this is my future, this is my new routine, this is Julie getting stuck with a needle.  how did this happen?  one year ago RA wasn't even something I had looked up on Wikipedia, and now it's my everyday.  it really sucks and it makes me cry.

Dr. J. and I had another visit this week that involved x-rays and more blood work, both showing that the RA is still having a heyday in my body.  x-rays showed that my feet do not have any permanent deformities, but my hands do have cartilage loss.  Dr. J., not one to let RA get the best of me, prescribed another oral medication and we will reassess in 3 months.  if Humira is being a bitch and hasn't started doing its thing yet, we have to move on to IV medications.  all I can say is you better get it together, Humira.

welp, this post is probably way too long and Debbie downer for anyone to actually read, but it sure has been cathartic to write again and continue to document this journey.  

The Lord is my strength and my song, and He has become my salvation; this is my God, and I will praise Him, my father's God, and I will exalt Him.  //Exodus 15:2