living with Lupus

It's been almost a year since my "formal" Lupus diagnoses. If you don't know about Lupus, please learn more here. The diagnoses was almost a sort of relief...I finally knew what was going on with me, what had been going on with me for so long. I still don't completely understand everything about this disease, and I'm still not super confident with how I'm living with it. Granted, being a nursing mother keeps me from taking many of the traditional pharmaceutical remedies for my symptoms. I eat healthy, drink plenty of water, make sure I'm active (I work out just about every day in some form or another), all the basic stuff. I take Aleve when I can (not while breastfeeding or during pregnancy, though), and I've started looking into fish oil/glucosamine/chondroitin.
I've had a few pretty bad flares, but the worst by far has been this one. I've been reading about it, and apparently it's common for women with Lupus to have a really bad flare after giving birth. Maybe it has something to do with the hormone shift? I don't know.
It's terrible. And frustrating.
I feel like I have the joints of a 90 year old woman. I can't make it through a workout DVD without nearly crying because my knees hurt so badly. My ankles are sore, inflamed, and swollen beyond recognition. My knees hurt just walking around. My wrists feel like they need to have braces on them. Some mornings my wrists are so sore that I have to wait a bit before I can pick up my son out of his cradle. Those are some of the worst times.
The fatigue is probably the next worst thing. No matter how much sleep I get, I'm still groggy and exhausted. Groggy and exhausted aren't exactly helpful with a newborn. He's awesome during the night. He wakes up a few times to be fed and changed, then goes right back to sleep. If it weren't for this ridiculous disease I'd feel awesome. It doesn't matter if I get 2 hours or 9 hours, I still feel awful. It's so frustrating. I'm getting worked up just writing about it. I don't know what to do. I don't know how I can maintain this. I wanted so badly, when they first told me that I have Lupus, to go on with my life as usual.
"Lupus isn't going to affect my life."
I wanted to be one of those people that laughs in the face of a chronic disease. To maintain my social life, work schedule, exercise schedule, and home life. 
Now a year later, I honestly just feel like I'm fighting life, not living it.
Something's gotta give, ya know?
This flare has lasted more than 2 weeks now and it's showing no signs of letting up. I have to cover up with makeup to hide the weird blotchy-ness on my face. I'm just thankful that my hair isn't falling out again.
I don't know how to make this make sense to people, even my husband.
"But you don't look sick" is officially my least favorite thing to hear. It's so hard to make someone understand what it's like to feel like your body is working against you. I feel like a prisoner in this sometimes. Like I'm not the one calling the shots, the Lupus is.
I've been working out every day for the past week or so. The last few pounds of pregnancy weight are being a total pain in the ass, perhaps thanks to the sluggish thyroid that accompanies Lupus. It's helping the depression that comes with my flares quite a bit, but it's hurting my body. I feel so conflicted... I want to keep at it because it helps my mind, and I need to work out after having Liam, but I can barely get out of bed the next morning. I can run for 30 minutes, which makes me knees feel like they're on fire, or I can walk fast for 75 minutes. I'd much rather be on the treadmill for 30 minutes, but I can't maintain this every day if I'm running. Seriously, I wake up the next morning and it feels like Kathy Bates hit me in the legs with a baseball bat. Misery indeed.
(See what I did there?)
I'm thankful for the good parts of my health, I know that I could have it much worse. I just need to stay positive and find a lifestyle and a balance that works for me.
I'm off to do a much longer cardio session than I'd like to.
Enough whining.  


  1. I can't begin to imagine what you are going through. Just don't let this defeat the bright, funny, wacky individual you are. When you feel physically depleted remember that you are so loved and needed. Hell, your Facebook following is legendary. lol. All joking aside...you are such a firecracker and I'm sorry that you have to struggle so much. Sending good thoughts and I hope this "flare" dies down soon so you can have some good days to get you through the bad. Love, Lis

  2. I don't know if it helps, but Liam is very, very small still. A lot of pregnancy weight doesn't need to be gone right away. It taking six months to a year to disappear is healthy and fine, slow and steady wins the race ;) Breast feeding can also help you keep the last little weight, since your body is doing all it can to hang onto the fat and nutrients to pass on to the little guy. Bodies are very, very different after having a baby. I hope that you find your rhythm <3