“Morning Ritual with Lupus. Do you ever have those days when you wake up, and you’re not quite sure if you just may have crossed over in your sleep? I do. That hazy fog upon the first eye-opening has proven tricky and is becoming more difficult to vacillate between my perspectives. One, I could be a ghost (which could actually be quite fun), or two, I’m just experiencing Lupus Fog.
Strange as it seems, I check for a pulse. Not in my wrist though, that never works for me. The tissue in my hands and wrists are filled with fluid, inflammation from the lupus. I go for the carotid artery in my neck. As I lift two pointed fingers up to my neck, my neural receptors kick on full force. I am conscious, and the four gong intro of ‘Hell’s Bells’ by AC DC, goes off in my body. Gong! Omfg, my head is ringing. Gong! My hands, my legs, my back, my hips, Gong! You get the picture.
Well, I am definitely awake and apparently rocking with my pain to AC/DC. Could have been worse, my brain could have chosen Milli Vanilli to associate the pain with. I will not be calling in dead. My neural receptors are wide awake and working better than anything else in this busted body, today. Feet: swollen, legs: swollen, eyes: definitely swollen. Thank God I watched that YouTube video on makeup for hooded eyes. Though, these eyes have three lids. ‘Hey Siri, Find makeup for three eyelids.’ I drop the phone knowing Siri doesn’t have an answer and if I have six eyelids, BE SURE, my eyes will look fire, like the Phoenix rising from the ashes. The pain is absolutely getting to the stabbing, stinging, sharp, gnawing, throbbing, bs levels and I need to act. This is lupus, though. Every tissue in your body is inflamed. Your organs are greatly affected, hence Systemic Lupus. All the systems of your body. ‘I got this!’ I say out loud with the greatest of confidence. If I was working out right now, I’d say, ‘No pain no gain.’
I have no choice but to hobble to the kitchen on two busted ankles, cracked shin bones, and fiery calves. I turn the hobble into a dance. I should video this, I totally see this becoming a dance challenge. I am in search of the coveted empty water bottle. ‘Aha, the precious!’ as I grab the bottle from the counter and begin filling it with about three ounces of cranberry five-calorie, no-sugar drink. Pulling the funnel out of the top drawer I quickly align it with the empty water bottle and open a fresh bag of Kratom. ‘Eww!’ The smell wafts through the air as I grab one rounded teaspoon of red maeng dao and dump it into the funnel every so lightly. I do this so the funnel doesn’t clog and pain relief can occur in a rapid time frame.
I cap the bottle and give it a vigorous shake. I hold the bottle up in front of me like Simba’s dad held him when he introduced the future King to the tribe. Ugg, it smells horrible. Similar to a composting pile of trimmed leaves and used vegetables. However, I down it in one disgusting swallow. The eww face ensues as I hear Taylor Swift’s voice in my head, singing, ‘shake it off’ ‘shake it off.’ Quite an annoying song, especially at 7:00 a.m., to be subconsciously running about my grey matter.
It occurs to me I have been doing this now for 5 years. Right now I am wondering why, in fact, I weened myself off the morphine, when the doctor clearly stated this is a bad idea. ‘Tina, you’re sick, like lifelong chronic sick. Though I am proud of you and your efforts to go narcotic-free, I feel this is a huge mistake and the way the medical industry in getting persecuted for narcotic use.’ She paused, covering her mouth as if these were dangerous words. ‘You’re gonna have a hell of a time getting prescribed narcotics again once you are off of them.’ I didn’t care. I was brave, different, one of a kind.
I may be lupus foggy, but I remember why I wanted to be narcotic-free after 9, long years. Because I am a warrior! I am who God says I am! Although people are misinformed, a chronically ill person is not a drug addict. I didn’t like being labeled, and I prayed for those who whispered behind my back. It isn’t my issue if your ignorance about my disease allows you to be judgmental, nasty, and filled with vile. It’s easy for people to take in other people’s criticism and believe the lies. I, however, believe what Spirit says, ‘I am healed, I am courageous, I am loved, I am clean.’ I didn’t need to prove my own family and friends wrong by stopping the pain management. I needed to prove to myself, who I was. I needed to act in accordance to my beliefs. We can’t talk the talk unless we walk the walk.
No one who spoke about me had to experience what I did. And though I sometimes wish someone could walk in my shoes through the SVT, the heart surgery, the liver failure, the strokes, the debilitating pain; honestly, a lot of people could not. More honestly, I don’t wish this disease on anyone. God reserves the hardest paths for those who can walk in honor, truth, courage, and love. I am one of them.
I have had my moments, this is true. I fell to my knees and I asked Spirit to take my soul. I asked to be removed from this painful vessel that housed my soul. Right after the 3 years, I was told nothing was wrong with me. I was told I was just probably depressed, needed attention. I turned my anger, my sorrow into courage. I fought for an answer. I advocated for my health, I advocated for myself and my children to have a mother. The answer was, I had SLE, Systemic Lupus. Yeah, I remember why I quit narcotics and I remember why I fight.
All I need is to get through this pain for 20 minutes. Within 20 minutes, the kratom will turn off my pain receptors and I can be productive. It is my right to be clear, pain-free, and be productive. It is a daily battle. More accurately, a minute-by-minute battle. I never know what I might wake up to. I could wake up with heart failure, kidney failure, brain swelling, or the daily pain level of eleven. I may not wake up at all. I have to choose minute by minute how I am going to respond. It’s not always easy, and some days, some minutes, I fail.
So I drink that bottle of kratom down and though the plant residue sticks in my stomach and makes me nauseous all day, I do it. I throw the bottle in the trash and stumble (dance) back down the hall to go lay in my bed for those 20 minutes and relax and give gratitude. 20 minutes is all it takes, and this green magic powder will take my pain from an 11 to a 6.
Right on time, about 20 minutes pass and my daughter runs to my room for a morning snuggle with me and the dog. She always stops by the refrigerator to grab the cold, pink rose quartz roller for mommy’s face. She jumps in the bed, and begins to gently roll under my eyes, the bridge of my nose, and then my eyelids. ‘Mommy’ she says, ‘one day, God is going to heal you.’ And at that moment, we are in agreement with healing as the tissue above and below my eyes gets smaller and smaller with every roll. I just start to thank God for giving me another day, when she interrupts with, ‘Can you get me some coffee and my eggs, please.’
‘Okay, I got this,’ I say to myself. My kids need me. They have no one but me and I have to show them what character is all about. I’ll say it out loud, for the people sitting in the back, character is doing what you have to or need to do, with gratitude, to the best of your ability no matter the circumstances. Just because the pain level didn’t’ achieve the normal 6, and I’m in an 8, that’s not a reason to try. I am not bedbound today, and there will be days, often weeks, I will not be able to get out of bed. Today is not that day.
I stumble down the hall and past about six mirrors. Why in the world did I ever decide to place mirrors down the hallway. ‘It will make the hall look bigger,’ They said. ‘You’ll feel better,’ they said, ‘less cooped up.’ Really? Because I just got a glimpse of myself in six different angles. I see the inflamed tissue in every area of my body. I notice the vitiligo down my neck and petechiae. In my head, the inner critic wants to speak up. Now I know why my ex is my ex. I literally think my flesh is rejecting this loop recorder they just put in my chest. I rub the raised skin on the left side of my chest. ‘That scar is getting worse… no, seriously… it is.!’ Looking more intensely, ‘It is purple, and it’s hard and it hurts… Should it hurt?’ I shake my head no, in response to myself. ‘I don’t think it should hurt.’
‘Wow!’ I say out loud, quite surprised. It really didn’t take long for that negative self-talk to come up. I take a deep breath and smile at my body. ‘Thank you body, thank you for keeping me alive!’ ‘Tina, your ex sucked, period!’ So I’m quite inflamed, so I’ve put on some weight from the steroid use. Those steroids calmed my immune system down. Those steroids saved my life.’ I stare into the mirror, smiling wide. Look at your beautiful self! Even with 10 more pounds, you look like a beautiful woman! Hey, and your boobs look amazing on steroids.’ I giggle at myself, a great coping mechanism. Try it some time.
Every moment is a choice. Embrace your flaws, embrace your quirks, and more importantly, embrace your illness. This illness will teach you to overcome so many things. This illness teaches you compassion, trust, love, courage, and shows you the inner strength you didn’t know you had.
There will never be three pages long enough to describe what a Lupus Warrior goes through on a daily basis. We have all sat in Emergency Rooms more days that we didn’t. We have all had judgement thrown at us. We have all sat in silence and asked, ‘why me?’ We have heard, ‘fever of unknown origin, chronic pain of unknown origin, organ issues with an unknown origin. We have all had people call us drug addicts, fakers and attention seekers. My advice, know who you are. Find out who you are and stick to who you are. Combat every minute, combat every bad thought with a good thought. Stay positive. Stay positive. Stay positive. Get in a community of Lupus Warriors. Support each other. Never judge a book by it’s cover.”
This story was submitted to Love What Matters by Justina Marino “Tina” from Los Angeles, CA and Neptune Beach, FL. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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