No pain, no gain

Yesterday was way, way too hot for September, especially since we don't have air conditioning. Normally that wouldn't be terribly troublesome during the day because it's air conditioned at work, but yesterday I was stuck in bed because my back was tired up in knots. I had this random burst of energy on Monday and went on a wild cleaning spree in the attic, which involved moving several boxes of books up and down stairs and being hunched over for several hours at a time. I woke up on Tuesday and tried to get out of bed; I got as far as sitting up and wound up spending 20 minutes stretching just to be able to stand up. I realized I was exhausted also, because I had written up several times from being sore and stiff. Even after I made it downstairs and downed my requisite cups of coffee my back was a tangled mess so I called off work. Standing for 8 hours doing makeovers would do me no good, so after I called off I hobbled back to bed and stared at the ceiling in frustration until I fell asleep.I was mad because I still had all that energy left over, but my body was not cooperating. And it was hot. So that's how lupus ruined my day, yet again.

Temper tantrum

August 10th So a few weeks ago I threw a temper tantrum over the phone to my doctor's office. Besides the fact that I've not done much to deter my lupus (because I don't actually know how to deal with lupus much yet), my doctor had forgotten to renew my antidepressants, which I've been on unceasingly for nearly five years. At that point I'd become a bit hysterical, and the fact that I'd been unable to get an appointment with any kind of rheumatologist/ lupus specialist until September. I was exhausted, achy, grumpy, panicky, and generally out of sorts, and very frustrated. The doctor's assistants were getting frustrated after my third cranky phone call, and finally I talked to the doctor, who prescribed a steroid and some other stuff. The steroid made me jumpy and insatiably hungry, but they were only five days' worth, and I didn't want to get fat and hairy and to turn into Arnold Schwarzenegger. The other ones don't do anything. And I've managed to find a much earlier doctor appointment, so hopefully it helps. In the meanwhile, I've been trying less pharmaceutical methods to get my issues under control. Because lupus is an inflammatory disease, I've been focusing on eating an anti-inflammatory diet, which has mostly tons of veggies, gluten free grains, and only un-processed meats in moderation. I've also been working on adding probiotic yogurt to my diet through a drink called kefir, and eating lots of berries. Basically, it's just a really healthy diet. I'm not sure if it's making a huge difference, but when I abandon my veggies and eat a bunch of bread or fatty stuff I feel exhausted and generally crappy. So maybe the diet is helping.

Now I get it

On Friday July 12th I finally learned why I really have depression. I assumed it and my fatigue were from my generic predisposition for anxiety and chronic depression, but after a bunch of tests it turns out that all that is coming from lupus. Yep. Lupus. What is it? Well, first of all it's not an std and it's not AIDS or cancer or anything awful like that. It is, however, an autoimmune disease which causes the immune system to attack the healthy tissue of the body, not just the bad stuff that actually tries to make you sick. It's like my immune system is having paranoid delusions. Which causes inflamation, causing pain, stiffness, headaches, fatigue (crazy exhausted run-over-by-a-semi fatigue), and even weird stuff like forgetfulness, foggy-headedness, loss of concentration, and sometimes being unable to even express yourself verbally. Apparently my brain is inflamed. No wonder I'm so confused and frustrated all the time. I had called the doctor to check on my lab results (I knew she had been testing my blood to see if lupus could be a possibility), since I hadn't heard back in 3 weeks. My doctor returned my call in the middle of my work day and said that yeah, I have lupus. I thought I had gotten over any shock of having a weird disease when she told me she was testing for it and it sounded like I might have it, but hearing her say the test had come back positive really shook me up. I held it together on the phone, but when I hung up I lost it, dribbling tears all over the cash register and watering a contract out of my eye. My manager was so supportive that she gave me the option of going home early that day to absorb the info, and my bgbf (best gay boyfriend) at work started crying too. I went home and started doing lots of research, like reading about causes (turns out that's still a mystery), coping methods, and suggested dietary restrictions and supplements. Most of all, I just let myself sleep. That's the biggest change this knowledge has had on me. I've given myself permission to rest because I know I'm not just being lazy, it's my body trying to deal with this disease. I recognize that sometimes I'm exhausted and run down and being frustrated with myself for it only increases stress, which is a major trigger of lupus flares. It's how my body is and realizing that I can't be mad at myself for it has given me immense relief and peace.