I have Lupus. Now what?

I have Lupus. Now what?

So it started, with a bang about a year and a half ago.  A new boss. My position, which I loved, was eliminated. A new position, which I didn’t love, was my option. It was an hour  or an hour and 20 minutes from my house depending on the day.  I figured I could “hang by my thumbs” for a year and hope for a positive change. The boss was not helpful, the position offered no training, and expectations were high, the stress was heavy. At home, along with husband and kitties, we have the homestead work: three acres, chickens, fruit trees, small vineyard, and a big vegetable garden and along with it the summer canning. The homestead would suffer a bit, but I could do this. I’m tough, I'm Wonder Woman, I can power through and reap the reward on the other side, right? 

I had these strange headaches and body aches and I wasn’t sleeping well. Stress right? It’s a stressful job; it’s only to be expected. One morning I look in the mirror and one eye is dilated like an alien eyeball, the other like a pinprick.  I go to the Doctor and that leads to a battery of tests, brain scans, and appointments with specialists, more tests, more blood work, more appointments, and there is no answer. Huh, that’s weird, they said, go about your business. Fast forward about 6 months, symptoms are still there and new ones are coming around, hip and shoulder pain that seems to have nothing to do with muscle activity and hits willy nilly, but painful enough that my coworkers notice even though I try not to show it. Raised itchy patches on my hands, elbows and in my ears and scalp. Trying not to scratch while in meetings with important people. The alien eyeball thing happens every once in a while, sometimes with or without the migraine headache and the nausia. I’m tired, I mean bone tired, exhausted, I really want to nap, and I never nap. I power through, get it done, and do the job. Now, sometimes I can’t sleep. I’ve always been a good sleeper but not any more, but I still have to go to work on 2 hours of restless sleep, I can do this. Follow up appointments and there is an ANA blood test that is alarmingly high. The word Lupus is mentioned, not a definitive diagnosis, but really I don’t even know what Lupus is. I go home and start researching a bit, that can’t be it, I’m a power through kind of person, that can’t be me, it can’t be that bad. Then, at an event on the weekend, got a little sun, and BAM! My world changed.  My body is so sore, my neck has a hot, itchy, painful raised rash, I take a 3-hour nap in the afternoon, and can’t keep my mind on track, and I’m forgetful and not communicating well. Back to the Specialist and it’s a definitive Lupus diagnosis.  What the hell!!! It’s just stress. That can’t be right, I’m not that sick…right?

Yeah, I’m really that sick. I am fortunate, however, this crazy, invisible autoimmune disease is not attacking any of my major organs, and I’m not going into heart, lung, liver or kidney failure. But here’s the deal…. I could…If I just try and power through…the way I always do…I could.  So what now?

I’ve been learning, about Lupus, and about myself and my new challenges and limitations.  With that has come changes. Pain is everyday. Naps are becoming a new thing for me. I always saw naps as cheating, so now I cheat. I have to rethink invitations to outdoor outings or patio dining. I hate being to one to cause a kurfuffle over sitting in one place or another, now I have to be “that person”.

 Even while I now have fantasic new boss who is kind and very professional, I have, just last week, left a job that paid well, in an area where good paying jobs are hard to find. I can’t “power through” any more, I can’t buck up and make it work. That kind of thinking could kill me. I am currently “on leave” with the hopes of finding another position in the same company, perhaps closer to home or part time without the stress of my old job. But is that even out there? How do you interview for a lesser position and convince them this is really what you want and need, what they want and need, without spilling your medical history and shooting myself in the foot? Have I made a huge mistake? I just don’t know.

I’m still shy about my invisible illness, because most people look at me and think “she looks fine”, so I can hide it to a point. I haven't told a lot of people. It’s uncomfortable to talk about because I’m not Wonder Woman anymore, and I was, I really was.