Between my last posting and now, I’ve lost one job and gained a new one, lost my health insurance too, luckily I was able to get medical care with the VA (being a veteran actually pays off for once!), and I am now on my second phase of the Lupus study drug (the Embody study) I’ve been on for close to 2 years now. Since I can’t afford the other medicines I am prescribed, the study drug is literally a life saver.
I’m receiving treatments once a week for 4 weeks, then I’m off for 8 weeks – and those 8 weeks are absolute hell for me. My last treatment of 2013 was in October, and I spent the Thanksgiving and Christmas holidays in pain from head to toe and fatigued (yes, an 8 week-long flare); so you all know I was in HEAVEN when I went back for my treatments last month. Now that I’m in the middle of my current 8 week off period, I’m spending most of my free time resting – need to conserve energy. It seems to me during the 4 week treatment period, I am pretty much symptom free, and I am able to power through my busy days, but within a week or two after my last treatment, it starts to get pretty dicey for me health wise; right now it hurts just to type this.
But this is therapy for me, we live in a society where whining is discouraged, especially for men – so this becomes my journal of sorts, where I can put my thoughts down which spares me from not having to express them live and go through the eye rolls and the heavy sighs……..
For those who read these few words, I pray you are in the best of health (as far as Lupus will let you of course) and thanks for stopping by.
By the way, I’m planning to sign up for my first ever Lupus Walk – actually I’m pretty stoked about participating. We need a cure for this thing – because Lupus sucks!