So what are some of the symptoms of Lupus? Oh bless it. Anything? Everything? Seriously? Seriously. Really, so many things. There have been times that I haven’t even bothered mentioning things when I’ve been at the doctors office because I’ve already told her about half a dozen things going on and feel like I’m being a hypochondriac already. So she prompts me to tell her anything and asks a couple more times, “Are you absolutely sure there’s nothing else going on?” Bless her heart.

These are some of the most common symptoms of Lupus. There certainly can be a heck of a lot more but these are the most common:

Fatigue, Raynaud’s, Painful & swollen joints, Headache, Anemia, Swelling, Blood Clots, Depression, Butterfly-shaped rash, Photosensitivity, Hair loss, Chest Pain, Fever, Chronic Pain, Insomnia, Lupus Fog, Mouth or nose ulcers

Chronic Pain. I live with this every day. I hurt all over, kind of everywhere, but it’s swollen joints and joint and muscle pain mostly, sometimes other pain. Sometimes the pain is so bad I actually wish I had some narcotics for the pain and I’m not kidding. Not even a little bit. The hardest thing, but most comical thing, I hear is, “But you don’t look sick”, and this comes from everyone and I understand that. Trust me. Sometimes my husband slides either way with, “You don’t look like you feel good at all” …. OR …. “You look like you’re feeling better”. Thanks. Nobody means anything by it, but all I can think is, do I really look that bad? OR … I think, well I really feel like crap and I’ll never tell you how bad I feel. In fact, I never have. I’m sure I’ve lied to a doctor just about every time they’ve ever asked me, except the time that I was absolutely certain I probably was going to die and they probably thought I was, too. The tests couldn’t lie so I quit lying and gave in. I’m not alone. There are many people who suffer from chronic pain, whether that’s associated with neuropathy from diabetes or fibromyalgia or back problems or depression or whatever it is …. it’s a phrase people hear a lot. Just like me, I’m sure many of them are playing down how terrible they feel, too. I know some people really have pain with some minor things too and while I don’t mean to dismiss those things, when you have a chronic autoimmune disease, some people really struggle to understand how it affects every facet of your life. When I say I’m having a flare up and that I’m so exhausted and hurting all over, and your reply is, “Well I thought you said you took a shower and got to rest by laying in the bed all day so why can’t you come out tonight <or insert random thing here>”, I’m probably going to be even more of a hermit. It’s hard to explain to people that when you’re having a flare up and having an exacerbation of symptoms, that you’re even more fatigued, and no two days are the same. One day I may be able to do a lot, on those days, move out of the way – haha. On other days, if I say I took a shower and went to bed all day. I’m probably feeling like 20 more days of sleep won’t be enough and my body is in need of that rest and trust me I don’t feel rested one bit after being in bed that long. It hurts to be stuck in one place for that long, I toss and turn a lot. But my doctor told me when my body says rest, to do it, and I found out that she is absolutely right. I’ve cut the recoup time in half for myself by just giving myself some grace and allowing myself the ability to just get through it and get on with my life. It’s not being lazy and it took me a long time to accept that, even if it took my doctor forever to beat it into my head. I have to work twice as hard to do half the work. Some days are harder than others. Some days are easier than others. It’s not easy this autoimmune life.

I get a pretty cute red rash on my face, and by cute I mean, I look like Rudolph’s cousin. I’ve gotten disc shaped lesions on my arm that took 9 months to heal, they weren’t anything bothersome, not hurting or itching, they were just there not wanting to heal so I hid them while the dermatologist prescribed steroid ointments repeatedly. But the rash on my face I can’t hide, unless I hide my face. I’ve done that some but I’ve gotten more use to not caring as much about what other people think about my appearance. This is the face God gave me and He thought it looked pretty good, so I’m not going to apologize for it. Now, my sense of humor, sometimes I may need to apologize for that.

Insomnia. Sleep is a real treat around here. It is more common for me to have a low grade fever than it is for me not to. Mouth sores (mouth ulcers/lesions) that don’t usually hurt but do sometimes. They aren’t contagious and I’ve found mine are actually just worse with immunosuppressants. Alopecia (hair loss) is common for many sufferers. Not only does it occur from lupus but medications from lupus also cause it, which makes it worse, and it can cause issues like anxiety and depression and further stress (which in turn can make it fall out more). I’m kind of living the glam life over here, alright. Raynaud’s Phenomenon is something that can happen and I don’t get any extreme color changes. My hands and feet do get extremely cold, and sometimes appear white, but they don’t get blue. Thankfully, because that would probably make me really anxious. I get chest pain which can be very common in lupus and a lot of sufferers get pleurisy. Complications that happen that can also cause that pain are pericarditis, myocarditis, and endocarditis. I have at least one headache a day. If I’m lucky it’s only one – if I’m extremely lucky it’s not all day long. I don’t remember what it’s like to live without a headache.

The hardest part of living with autoimmune for me is …….. fatigue. The extreme tiredness, that you can’t explain away and you can’t sleep away… it’s the worst for me. Actually if I could trade…. I’d rather be tired than have headaches. Wait, can I trade again? Can I have my memory back? My soundest of sound – mind? Because lupus can cause confusion, forgetfulness, brain fog; also called “Lupus Fog”. Lupus has made me loony. I’m trying to be playful, but it’s kind of broken my heart and kind of shattered little pieces of my identity along the way. When you start forgetting things that you once thought you knew “for good” …. things that were as easy to you as “2+2=5” …. ha ha, kidding (kind of, I’m terrible at math). But when you think you know that 1+1=2, or that a giraffe is a giraffe and not a zebra when you’re reading your toddler a book, or when you want to throw your Bible at the altar at church because God …. well He doesn’t change, and in His word He even says He doesn’t change, so He doesn’t – He is INCAPABLE of changing because His Word is perfect and infallible. . . (Malachi 3:6, Hebrews 13:8, Isaiah 40:8)…but? But His Word changed (around) in the Bible. And after all these years when you turned to the Book of Luke, it wasn’t there. It had to be there, but it wasn’t.

It wasn’t.

I couldn’t grasp the idea that the Books of Matthew, Mark, Luke, and John belonged together in the New Testament. . . where they had always been, but I was convinced that day – and I mean utterly convinced – that Luke was in the Old Testament.  I went back and back scanning the pages and I thought there was something wrong. That was the moment I realized I needed to call my doctor about how bad my headaches had been and then sometimes you just make a choice about what you’re willing to do, take nasty medicine that is going to help reduce inflammation that is causing problems or avoid the side effects of the medicine. Here’s the thing, I’d been feeling pretty good for a while. . . but I have a duty in this life to guard the Word of God. His Word — It may be in the Bible, but it’s still my job to guard it in my heart and in my mind and if the enemy wants to bring me down, in my pain and suffering, to try to accomplish his will – let him – I already knew I was engaged in a spiritual warfare long before my body felt like it’d been thrown on the tracks. The enemy isn’t going to stop God’s perfect will for my life, and if I have to take awful medicine to help me, I’ll do it. If I have to hurt like crazy, every day, just to get up one more day to, as my Pastor says, “Say a good word for Jesus”, then I’ll do it. A dead Christian is the only one that isn’t evangelizing and making disciples, and for as badly as the enemy wants to come to try to take from me; God has blessed me. If Jesus could suffer what He suffered for me and now He’s sitting at the right hand of God … what do I compare my suffering to? Really, on a scale from Zero to God’s not on the Throne anymore, how bad is it, really? My pain doesn’t seem so significant when I think of it like that. I will love the Lord until He takes my last breath from me and then I’ll love Him forevermore.