Saturday, April 26, 2014

Walking Through Turmoil

Ah excuse me a moment as I just blow the dust off of the keyboard.  I know... I know... it has been literally ages since I have last posted. A lot has happened as of the late and I have plenty to share.  Part of my long hiatus has been troubles with logging into Google Blogger.  For whatever reason it decided to be fussy every time I tried to log on and with limited spoons, I just couldn't devote my energy to trying to get it working again.  Today I didn't exactly have the energy but I don't do much outside of bed now on Saturdays, so I had the time.  Several hours later, here I am typing at last!  

I'll jump right into the nitty gritty here.  I've been on Methotrexate now for almost a year and a half.  For those of you who do not know what Methotrexate is, it is an oral chemotherapy drug used to treat various kinds of cancer and in select moderate to severe autoimmune disorders.  Why chemotherapy for Lupus?  Simply put there just isn't anything else out there to use.  A weekly dose of 10mgs was tolerable, 15mgs was okay... 20mgs was pushing it.  Now on Friday mornings I take 12.5mgs before classes start for the day and 12.5mgs in the evening.  In total my dosage is up to 25mgs, I am not tolerating it as well as I would like to.  Saturdays I spend sleeping in bed, throwing up, possibly walking Lily if I feel up to it and feeling absolutely lousy.  It's not fun.  I have rave reviews on gum though, it can help with the nausea. 

Psychologically going through weekly chemotherapy treatments is one of the most isolating and alienating feelings I have ever experienced.  I don't have Friday nights to go spend with friends doing fun adventurous things.  Saturdays are completely shot with me being absolutely exhausted from dumping toxins in my body the day before.  Granted I realize many college age students spend their weekends in a similar way, but generally they choose to and enjoy themselves in getting to the stage of performing mouth to mouth on the toilet.  Then Sunday comes and I just spend it doing homework.  It is hard to do homework with a fuzzy head, lingering nausea and still feeling like I am made of concrete.  Even holding a pencil is exhausting for me on the weekend.  It can be really hard for others to understand just how soul crushing it is to spend your weekends alone and sick, with nothing really to look forward to.  I don't have weekend plans ever.  I can't really, I'm scheduled already to be sick.  It is not uncommon for me to be in a puddle of tears on Friday afternoon because I know what is coming and I just hate it.  

This winter was filled with Prednisone, a wonderful steroid that effectively suppresses the immune system.  It also causes weight gain, moodiness and the ability to be nocturnal whether one really wants to or not.  What an experience it was!  I think this winter I consumed more chocolate than I ever had in the rest of my life.  Dark chocolate of course.  Nothing but the best for those steroid cravings.  

It was "dead week" for winter quarter at the end of March I got an email from the specialist that I see at the hospital.  She shared with me my latest lab results.  I should have not opened up that email... what I was told inside of it was not the news I wanted.  We're going to take another set of labs here soon to see if they turn out differently, or else I may be looking at an even more drastic treatment protocol.  I've had to incorporate stronger pain medication into my life more frequently now to help with the physical discomfort Lupus has brought me and to help keep me at a quality of life I can enjoy.  

I have a lot more to share about but am struggling to stay awake as I type.  More soon and many spoons! 

PurpleGirl :) 

     
        

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