Okay. I said I would gradually make my way to writing more about Lupus. So here I am. I’ll write more at some point, about medication that I’ve tried and about a new diet that I started called the AIP Diet (autoimmune protocol diet), but for now I’m just going to tell you what Lupus is.
What is Lupus?
In a word: Stupid.
It’s the lamest thing ever. It’s a chronic illness, and it’s like the Energizer Bunny, it keeps going and going and going.
It’s an autoimmune disease. For those of you who might not know what that is exactly, I’ll try to help you understand a little bit, but I’m not a doctor so I may confuse you more. Sorry. Basically when you have an autoimmune disease your body attacks itself. Our immune system, that handy thing we have that usually helps protect us from getting sick, that’s our body’s defense system. So anytime our body get sicks and/or detects foreign invaders (bacteria/virus) that’s when it goes to work. The immune system sends out an army of cells called lymphocytes (a certain type of white blood cell) that fight off infection. In a healthy, typically functioning body (*normal immune system*), your body can differentiate between these invader cells and your own body cells, but when you have an autoimmune disease your immune system mistakenly attacks itself. Your body, depending on the autoimmune disease you have, may target just one organ and/or several. There are so many different autoimmune diseases out there. Rheumatoid Arthritis, Lupus, Celiac Disease, Type 1 Diabetes, Hashimotos Thyroiditis, Irritable Bowel Syndrome, Crohn’s Disease, and Multiple Sclerosis are just some examples of autoimmune diseases. When your body attacks itself it releases these proteins called auto-antibodies that attack your healthy cells and when you have a disease like lupus it affects the whole body, so your joints, skin, organs … everything.
Years ago one of my doctors told me, “Your sibling is the one person most closely linked to you so if one of you has an illnesses, look to the other.” That doctor was right. My oldest sister has lupus. I have lupus. She wasn’t the first person I knew personally to have lupus. One of my former pastors, Pastor Wendell, a man I’ve known for nearly twenty years didn’t just teach me about God, he taught me about lupus. Many years ago, before either of my children had ever been born, his wife, Servina, was hospitalized and we sat down in the hospital while she ate her dinner and he explained to me how hard it was on her and how it affected her body. It sounded so mean and frightening. She’s a warrior. She was the first person in my hometown, and actually in my life, that I had ever known to have lupus. She’s been an advocate for others with the disease for years and when I get scared about the future, I can log onto Facebook and look at pictures of her with her children and grandchildren, and I think it’s not so scary. There’s hope for tomorrow and I smile knowing the same God who has been so good and faithful to her is the same God who is good and faithful to me. He’s the same yesterday, today, and forever. (If we’re friends and you’re reading this – yes, there’s another Pastor Wendell. Small World! lol)
“Jesus Christ is the same yesterday, and today, and forever.”
Hebrews 13:8
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11
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.
My Mini Pharmacy.
I’ve been on anti-inflammatory meds, pain meds, muscle relaxers, anti-seizure meds, steroids, anti-malarials, chemo drugs (immunosuppressants), nausea meds … it’s really a game of try and see, and I’ve tried it all. It’s kind of Russian Roulette. Let your doctor add one, and another, and another – keep getting labs drawn – until you have a daily cocktail of meds that work for you. What’s better than that? Most of the medications come with side effects that are far worse than Lupus symptoms are themselves. Why take them? Sure part of taking meds is for “symptom management” but a big part of taking meds for autoimmune disease, particularly lupus, is for damage control. When you keep the inflammation down in your body, it helps prevent or reduce the severity of attacks/flares, and can help you reduce the lasting effects on your body. When you have Lupus you worry about long term organ damage, and specifically worry about kidney nephritis. Have you heard of the singer/actress Selena Gomez? She has Lupus and has already had a kidney transplant. She is so much younger than me that I was absolutely stunned when I learned she had went through that. On the flip side to that … a lot of the medications that we’re given for Lupus are actually bad for long term use and can cause organ damage and increase your risk for cancer. Life is a messy thing. A praise here, I’ve actually come off a couple of my meds! Yay, God!
The Good News.
The Good News is that though my darkest times are so dark … I still have the Good News and here’s some good news when I’m feeling bad. . . just because I feel like crap doesn’t mean I’m not going to have a good day. Just because I hurt doesn’t mean I can’t enjoy my day, my family, my tribe, or get things accomplished. Just because I hurt and there’s no cure for Lupus doesn’t mean that I don’t get to have a fulfilling life. I’m not always going to be happy. None of us will be. Sometimes I have really crummy days and I hurt so bad I can’t stand it and I say that I’m over it; I’m just over it and it just affects my day. It’s kind of like a pity party, like “Why me?” and “I’m so sick of this!” It gets really hard. I know the Lord is fighting for me and that He cares but in those moments I don’t necessarily “feel” Him. Then I really start to struggle. Then I hurt more. That’s the kind of emotional hurt that makes my body physically hurt more. It’s never easy to have those seasons where we feel that we can’t feel God. I start to feel like I’m not where I’m suppose to be or that I’m doing something wrong. I start to feel self-conscious. I start to feel like I’m missing the mark. Then the more I worry about how I can’t feel God close to me the more I begin to doubt. Then everything begins to spiral downhill. My focus lifts off of the Father and onto myself (which I think itself is idolatry). I begin to wonder what I’ve done and worry about this and that and how I’ve become separated from Him, because now there’s this disconnect there.
Here’s the thing, when that happens it’s going to hurt for a bit of time but that season will come to pass and in the next we’ll find ourselves thinking, “Well I knew He was there the whole time, how could I not realize how stupid it was for me to say that? How pitiful is that?” I know that I have to choose if I am going to believe what I’m telling myself … that He’s not really close to me, that I have screwed up and can’t be back there OR choose to focus on Him and who He says I am, what His Holy Word says, and who He is. I can’t believe that He’s not close to me because I fully believe He is Omnipresent, so I can’t rely on those feelings when they take control. They’re just feelings. His IS near. Always. and if we’re in a relationship with Him, we just need to lean into Him.
“He is before all things, and in Him all things hold together.”
Colossians 1:17
“For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”
Romans 8:38-39
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9
God is with me despite the suffering that I’m going through.
In the Book of Job, the devil told God that if He took everything from Job that Job would curse Him (God), so God protects Job. God gave permission to the devil to do whatever to Job so long as he didn’t kill him, he told the devil exactly how far he could take it and not a step further. (See, even the enemy has LIMITED power, the ultimate control IS in God’s hands). So the devil went off and tore everything from Job. Job said something, but it wasn’t really a complaint I don’t think, it was more like a plea – like don’t condemn me (I think, I’m not a theology person). The enemy was wrong, Job didn’t curse God for his sufferings and in fact, Job praised God (don’t think too much about that, he didn’t praise God for his suffering, he just praised Him for being God; he loved the Lord and he simply worshiped him, still, just from the relationship he was in with Him. Man, the devil is dumb. D-u-m-b.) Yes, I can still worship the Lord despite what I’m going through. I have to grieve sometimes for the life I thought I was going to have and then let it go and still hope tomorrow is better, still. I’d sure love to think that I’d praise my King if my children died, like Job did, but ……I know me. I live with myself. It seems a lot like I’d probably be screaming and cussing in my head if I went through that, like a rage of emotion, I don’t know how quickly I’d be able to fall to my face and worship. This is clearly an area that I need to be speaking to the Lord about. It’s not easy to “commit” our children’s lives to Him and really mean it. Like, sure you just “have” that control, Lord. I’m not a control freak anyway. Except, I might be. Job’s wife told him to just curse God and die, like be done with it already. Really Job had been through what I’d have considered hell on earth, he could have thrown in the towel and nobody would have blamed him, but he stood firm in his faith. (Job 2:9-10 or something like that). Job wouldn’t do it and was a stand up guy. If the good Lord takes from you are you going to curse His name? What’s your response going to be to Him? It’s easy to say, “Thanks be to God”, when things are going our way but then cuss Him under a bus at the first sign of trouble. If that’s where you are, He is waiting. You can’t borrow my faith, I’ll die for my relationship with Him so I’m not giving it up for or to anybody; you gotta have your own faith, your own relationship with Him, to get you to where you need to be going.
Look I don’t why suffering happens. I understand that it does. I even understand that good can come from it. I understand that God can be glorified. I even understand that some suffering can come from unrepented sin, if you haven’t read this post, check it out. But this just being sick with autoimmune crap, I don’t know. I don’t know why any sickness or tragedy happens. I remember one time I really struggled with being so confused at why God would allow me to be so sick at the same time my daughter was being born with health issues, it was so complicated and messy, and I couldn’t figure it out. A pastor sat down with me and said, “Don’t let the enemy fool with you. Don’t buy into prosperity gospel. Some of the most righteous people I know have the most failing health with more issues than you’ll ever consider.” I never thought I’d have bought into any of that prosperity nonsense before that moment and I never thought I would but he pointed out something in me I didn’t know I was susceptible to (not till then, I’d find out a couple years later how strategic the enemy is). I also didn’t realize until the end of that conversation that sometimes the Lord allows suffering through some of His children for such a divine purpose, one that I could never appreciate or fathom. There may be something in your life that’s making your health worse, maybe you have unrepented sin that needs repentance or a sedentary lifestyle that needs a makeover, or maybe you have a really unhealthy diet that needs to be cleaned up as well (processed foods wreak havoc and increase inflammation) … but even if those things are present that doesn’t mean you still won’t be sick if you rectify them, you may be sick absolutely regardless. If those things are present, get them corrected immediately. By the way, Job was blameless and a man of repentance, so that’s not why he suffered, okay, so jot that down.
” There was a man in the land of Uz whose name was Job, and that man was blameless and upright, one who feared God and turned away from evil. ” Job 1:1
Next to that I need to say this, and it’s important: though sometimes the former 3 things may be present in peoples lives…. the enemy, the author of lies, loves to make people believe they are the problem or responsible for something out of their control. I didn’t cause my autoimmune disease and I can’t cure it, I don’t have that much control, and I’m actually okay with that. But the enemy loves to make us feel bad, to make us second guess everything in our lives and wonder and accuse, it’s what he is good at and it helps to create a disconnect between us and God, and other people.
But God’s ways are better than our ways. Gods ways are higher than ours. I don’t believe we can fully understand, I don’t think we have the capacities to, because we have finite minds.
“To God belong wisdom and power; counsel and understanding are his.”
Job 12:13
Will He reveal to us in the days of eternity why we suffered as we did? Maybe, maybe not. Will it matter? Maybe, maybe not. Will we really care? Maybe, maybe not. We’ll be in the presence of King Jesus, worshiping Him … will anything else matter when that day comes? Nothing else will matter to me, I know that because I know right now that I’m ready for Jesus to come. I joke around a lot when my house is a wreck, my husband is on my nerves, or my children have me a foot in the loony bin, I joke and say, “Jesus Come”. But it’s not a joke.
Jesus Come.
Please. Please, Jesus, Come.
I’m ready. Are you?
Are you? Have you responded to Him today? God sent His one and only Son to die for you. Can you rest easy, today, knowing that you will worship Him? Every knee WILL bow, but narrow is the gate to Heaven.
“Enter through the narrow gate. For wide is the gate and broad is the road that leads to destruction, and many enter through it.” Matthew 7:13
I don’t understand much, but I trust Him.
I struggle with my place, I struggle with feeling important because I feel like I am an inconvenience when I feel so miserable, and I’m a flawed girl, a “comparer”, so I struggle with what real contributions I have in the Kingdom work but the more I push back with resistance, the more opportunities the Lord provides for me to minister to others who are hurting. He’s faithful in much and this has been no exception. Whether it’s been through my child’s struggles since birth or my struggle, He’s consistently showed me where I can extend compassion to others who are hurting. This blog came out of obedience to God, it’s an extreme vulnerability to put myself out there … God remind me it’s none of my business what the critics say, it’s for your glory and not my own. My only expectation of myself is to contribute to the Kingdom; I’m trying to be faithful with what He’s given me because it’s all suppose to be for Him from the beginning to the end anyway. I’ll give Him back what He gave me to use and if He’s allowing me to be sick to glorify Him with compassion and testimony, I’ll do it, and I may not understand it all, but I will be as good as lukewarm if I don’t use it to glorify Him. You know when we go through hard times it can really help prepare us to help others who are struggling with their own battles or suffering through tragedies. It helps us be more empathic and sympathetic to others. When we have been comforted by the holy Word of God, our Father helps us to comfort others.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
2 Corinthians 1:3-4
If you’re part of my tribe: my family, church family, neighbors and friends; you’re priceless. Thank you, thank you for your support. Thank you for your words of affirmation, thank you for offering help even when I don’t usually take it; it still means the world to me. Thank you for being kind, loving, and patient with me. I know I struggle with giving myself grace, especially when it comes to forgetting things and when I feel that I’m being an inconvenience, but I love you more than the stars.
“The Lord gives and takes away, blessed be the name of the Lord.”
Don’t forget that. He gives and takes away. So many of you are hurting today; suffering with chronic pain, autoimmune disease, cancer, addiction, battling for that prodigal son, braving your way through that divorce, fighting through depression, aching through infertility pains.
Grieve for the life you thought you would have.. Tomorrow is a new day; He can write you a new story than you had planned for yourself. Something I heard a long time ago was, “Sit down and write down your plans for your life with a pencil … then hand God then pen.” Try that.
“The Lord gives and the Lord takes away, blessed be the name of the Lord.”
Job 1:21