 It's a gray July morning with rain in the air. The sunny days of June, have been replaced by the moody July weather. I'm scrolling down a ever colorful Instagram feed as breakfast is sinking. High mountain peaks, blue sea, happy children, family breakfasts, couples in love and perfect sunsets. Outside the living room window rain is dripping and the sky is gray. A lonely bowl of oatmeal is sitting in the sink along with a cup of coffee. I shut down Instagram and tie my sneakers instead. With the change of weather, the desire to run has reappeared. The time is ripe to get started with cardio and strengthen the heart.
The heart. The symbol of love. The source of our life force. The muscle that pumps the blood out into the body and holds the most important emotions. If the physical heart remains strong, then perhaps the metaphorical heart can withstand and hold more as well. If you're careless with whom you give your heart to, you risk being heartbroken. If you have been diagnosed with lupus, you risk early development of .. atherosclerosis ..? Atherosclerosis is the medical term for what grandfather calls hardening of arteries. Fat or inflammatory cells accumulate in the arteries which makes the blood vessel narrower. The blood flow with all its nutrients and oxygen is reduced, and finally when the veins are clogged you get a heart attack or a blood clot. Cardiovascular disease is the most common cause of premature death in lupus patients. This is reflected in the rheumatalogists advice about sticking to a heart-friendly diet, such as the Mediterranean diet. Another common heart condition that is directly related to SLE is pericarditis, inflammation of the pericardium. It's an inflammation of the membrane around the heart, which causes pain in the chest, especially when you breathe deeply. Although pericarditis is common in lupus, very few get serious problems from it. What I'm feeling in my chest today, however, is neither from pericarditis nor atherosclerosis. It's the feeling of a heart that is working a little harder, with a steady pace, up Krokkkleiva. A burning in the leg muscle reminds me that it's been a while since the last time. The contrast between the green, lush forest and the clammy, white fog that's seeping down is striking. A bit like the contrast between the Instagram feed and the first of the summer holiday. The contrast between the lonely oatmeal bowl and the freshly baked family breakfast. Rain and salt mixes on my cheeks and trickle down my skin while breathing get's a little heavier. Suddenly I'm up at the top and my hand touches the fence at Kleivstua. There is something nice about going out into the rain too. Meeting the grey and gloomy head on. Feeling the contrast from the sunny days. And tomorrow it's going to be sunny again. Sources: https://www.legeforeningen.no/contentassets/96dde4ab348e41cbb5e2f4d4fa9a6e37/hjf-2016-5-kardial-affeksjon-ved-autoimmun-sykdom.pdf https://revmakompendium.pressbooks.com/chapter/hjerte-manifestasjoner-ved-revmatiske-sykdommer/ https://sml.snl.no/perikarditt https://nhi.no/sykdommer/hjertekar/ulike-sykdommer/hjerteposebetennelse-perikarditt/
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 The iPhone ringtone breaks the silence of the bedroom. I usually pop straight up when the alarm goes off, but the eyelids feels unbelievably heavy today. The body feels tough, heavy and requires 15 minutes to recover from sleep before it's functional. A giant yawn and a few stretches later, I'm finally in an upright position on my way to the bathroom. The rash is blooming over my cheekbones and doesn't seem to be going away anytime soon. There is a feeling of "something" festering in the body. The mouth ulcer has come alive again, but luckily the showerdrain remains empty. The incredible flow and energy I've felt lately are slowly schreeching to a halt this week. It's in the fickle nature of the disease to fluctuate like waves and I suspect that I'm about to become acquainted with going down the wave again. "The Lupus Encyclopedia" is delivered on my doormat this Friday morning. It looks thicker and more detailed than expected and it pleases my information-seeking nerdy heart. When you first start reading a bit about the immune system, it is actually incredibly fascinating.
You´re advised to familiarize yourself with, and read a little about the disease, but there's a limit to how much information you really need. I told myself early on that I should first and foremost focus on the symptoms I have been diagnosed with and not everything else. On one hand, I want to know enough to take sensible precautions, on the other hand I don't want to dig so far into the matter that I start to look for symptoms and signs of illness. In a way, I've already experienced that I can't think myself healthy. Living under the impression that I was completely healthy this fall, overlooking all the symptoms, didn't make me any healthier. But I strongly believe that both our positive and negative thoughts can effect the body physically. There are studies on both the placebo effect and the nocebo effect that indicate both positive / negative expectations can affect the effect of treatment. I think this is useful to keep in mind when trying to find a balance between managing symptoms and precautions and living as normal as possible. So for now I will try to put aside the idea that there is "something" festering in the body, until the doctor and the blood tests say otherwise. Sources: https://forskning.no/sykdommer-psykologi/du-kan-tenke-deg-syk/779562 https://forskning.no/menneskekroppen-medisiner-ny/bivirkningene-ble-verre-da-pasientene-trodde-de-fikk-dyr-medisin/316475 https://tidsskriftet.no/2019/08/debatt/leger-har-placeboeffekt https://www.webmd.com/balance/features/is-the-nocebo-effect-hurting-your-health#1 https://www.webpsykologen.no/artikler/noceboeffekten/  The soil feels moist and sticks to my pants while I lie on all fours in front of the Jerusalem artichoke bed. Tiny, green leaves sprouting all over the vegetable bed. It's been a little over a week since I was here and weeded out the same green leaves, but here they are back again. Diligent, gloved fingers gently digging into the ground, trying to pull them up by the root. To make room for Jerusalem artichoke to grow big and strong. It's kind of the same with mental energy. If you let the mental weed grow, there will be less energy left for the rest. So often it's spent on trifles and nonsense. Like this week for example where I have spent an awful lot of time being annoyed by a letter that arrived in the mail. In the bigger picture, it is not the end of the world that the board has decided to remove my newly built flowerbed. But it irritates me a great deal. Being annoyed isn't always pointless. It made me sit down and write a proposal to the general meeting, but when it was done I should have just let it go. Instead, I have gnawed at it every time I see this letter. So for now, I have to deal with the same way as the the small green leaves, weed it away by hiding the letter in the drawer. Some weeds require a little more work, like dandelions. It's not enough to poke around in the ground. The root is deep, and usually you don't get the whole thing out. No matter how deep you dig and how hard you haul, there is always a small piece of it left. A small piece that has suddenly grown big and pops up again at the wrong time and place. Like the fear of not being able to be a mom. That's a dandelion I have been working on a lot, and I'm finally getting to the end of the root. All the world's pondering, anger, tears and wishful thinking will ultimately not affect the outcome. And that's often the case with some of the things that are allowed to take up mental space. Some people manage to see dandelion as more than just weeds, as something edible. Apparently it tastes good too. Maybe you have to do the same with the mental dandelion as well, make the worst case scenario as edible as possible ..  "I'm still standing better than I ever did Looking like a true survivor, feeling like a little kid " - Elton John The words of Elton John's "I'm still standing" is flowing through my head. It's Sunday and I'm on the track circling the stadium. A blanket of wood anemones is covering the forest floor. My heart rate rises, and my thighs tighten as I push the pace. There's a healthy burn in my chest, and it feels great! The only thing running down my cheeks today are raindrops. Today I am happy and strong. Not because I have miraculously recovered, but because all the bad, sad and painful things have made me stronger, more robust! But this post is not for me. This post is for you. To whomever is in that same dark and painful place and are feeling really upset right now. Who feels that life has taken a turn for the worse and that the weight of the diagnosis is about to break you. It gets better! The dark moments will be fewer and further apart and you will come out stronger on the other side. I promise you, do not give up! If anyone can handle this, it's you!  Not sure where I found this meme It is passed 01:00, and I still can´t sleep. The prednisolone has made me a nocturnal animal. Tears are streaming down my cheecks. Theres a little burn as they run through the rash that has begun to spread down the bridge of my nose. The skin feels tight, sore and dry. A dark loneliness has filled the bedroom and is pussing my head deeper and deeper into the pillow. Maybe it would have been better if I just died now? Go out with a bang instead of slowly but surely fading away in sickness and loneliness? The wolf hour is about to tighten it´s grip. Deep, deep down, at the core, I know it will eventually be ok. That the feeling of being broken and damaged will pass. I will feel better soon. But with the lack of sleep and the wolf hour seeping in, I am overwhelmed by this vast feeling of hopelessness. It's like the power of the wolf hour is intensified by the prednisolone. It spreading like a dark tough, goo and seeping into the most vulnerable places, where it can do the most harm. "Your heart is going to get sick and stop," it whispers. "But you do not need a heart, because no one will ever love you. How could anyone love you now? You are sick, ugly, old. You will die soon, all alone in great agony." The ugly voice won´t let go. "You want children? Forget about it. You don´t deserve to be a mother. Your horrible pool of genes should die along with you" Ironically, lupus means wolf in Latin, and tonight it´s trying to eat me alive from within. I hope it will loose some of it´s energy soon..   Encouragement from the best colleagues I can´t remember where this sentence comes from, and even though there is something clichéd about it, I quite like the idea a bit too. "What if it´s a gift?" Don't get me wrong, if I had a choice I would have politely declined the gift of lupus. But since thats not an option, are there any positive side notes to this? At least it doesn't hurt to look:
1. People are in general wonderfully caring and empathic. 2. Its a wake-up call, a brutal one, but none the less, are you living the life you want or living on autopilot? 3. Luckily it was discovered very early on! 4. Luckily it was discovered before I got pregnant! 5. Thank heavens for the Health Service and the welfare system in Norway 6. Its a reminder of what an incredible and intricate machinery the body is 7. You are so much stronger and more resilient than you think It's a pale, miserable face looking back from the mirror over the sink. The sparkly dress I have put on in an attempt to feel a little glamourous only adds a stark contrast. It's New Year's Eve and I can't wait for 2020 to be over. It was the year covid-19 came. The year I fell in love with the wrong man, who fell in love with someone else. The year I had 3 attempts to get pregnant in Denmark, and came home empty handed. Well, maybe not completely empty-handed, since I ended the year with a Lupus diagnosis. My New Year's summary feels grim. There is no trace of optimism in my reflection. I don't recognize this pale, mute, sad person staring back at me. Piece by piece, I've been plucked apart, and I don't know how to put the pieces back together. The puzzle pieces I have been given no longer match the image on the box. Almost 2 weeks ago I got the message from the doctor. In the blink of an eye my life has taken a direction I was not prepared for. Suddenly I have gone from healthy to beeing a chroniccally ill patient. I, who rarely get sick and almost never take Paracetamol. Now have a pill box(!), filled up with pills to keep my own body from attacking itself. 4 weeks ago I went up to the top of Bitihorn and skied down again. Now I am lying on the couch waiting for the pills to work, so that the feeling of burning cement that's floating aruond in the upper body will disappear. I did not realize how much identity I put into being healthy until I became sick. When a friend of mine told me a few years ago that she had been diagnosed with MS, I admired her for how well she handled it. She talked so calmly and casually about it, and I was impressed by her strength. As if she had dug deep and found gold. I'm afraid I will not find the same gold. I'm afraid I'm going to dig deep, and the only thing I'm going to find is bile, ice and nothing nice. The feeling of bitterness and unfairness is overshadowing the fact that it could have been so much worse. But beneath the gloom and doom lies a small glimmer of hope. In a way, this has also been a wake-up call. A realization that time and energy is a scarce commodity and that life is short. Do I spend time and energy on things that mean something to me? Am I living a good life? Is there anything I want to change? Can I turn this into something good? When the low is as deep as it feels now, surely the high that follows must be so much greater. I just have to get through to the other side of this. And January 1, 2021 is probably a good place to start ..  This morning it's worse than ever. My arms, hands and neck hurt so much that even the slightest attempt to move makes me nauseous. I manage to get up to a seated position in and have to wait a few minutes before I try to put on a sweater. There's not much left resembling me as I drag myself down to the kitchen to get my first dose of the day. I have to use both hands to get a glass out of the cupboard and swallow the pills. In a couple of hours they will start to work and the body will start to feel a little more inhabitable. I got a new appointment at the rheumatlogist today, so by the time we approach Drammen my body will hopefully be a little less crooked and stiff. But in the meantime I have to go to the bathroom. It´s a humiliating moment when I realize that I might have to ask my mother for help, to wipe myself. It's a feeling of total helplessness. Fortunately, I finally manage to force my arm just far enough, but the movement makes me incredibly nauseous and dizzy. It feels like I'm about to faint and fall off, ending up in an equally humiliating position. 2020 sucks. Fainting on the toilet would be the perfect ending to this shitty year. As we approach Drammen, the medication has started to work and I am finally starting to feel a little better. There's a new rheumatologist I'm talking to this time. Despite the shitty start to the day, I am feeling optimistic and that my luck has turned. So I might just as well ask her if there is any possibility that this is not lupus. She assures me they are certain of the diagnosis. Parts of me have been so certain that there's a mistake somewhere. That maybe my blood tests have been mixed up with someone elses. That my test results miraculously have returned back to normal. I have not quite accepted that I suddenly have a chronic illness. It is slowly dawning on me that this is actually something I have to live with and that the miraculous news I am waiting for will never come. It turns out that the level of protein in the urine is rising, indicating that I have lupus nephritis. Meaning there's inflammation in the kidneys, and the kidney function is affected. Therefore the dose of prednisolone must be doubled. All the side effects of prednisolone are still fresh in my mind, making me whimp. In addition, I will be put on another immunosuppressive medication to treat the inflammation in the kidneys. Since I want to get pregnant and have children, I am prescribed Imurel. "It can cause some cosmetic side effects, such as warts and brown spots in the skin." A loud grunt accompanies the words coming out of my mouth. "Warts? Am I going to swell up like a balloon and get warts?" I hear how silly it sounds as the words leave my mouth. "The most important thing now is that you concentrate on getting well" her voice is firm but compassionate and I feel a little stupid worrying about weight and warts. Apart from the joint pain and stiffness, I don't feel to bad during the day. but it is quite clear the doctors are worried about my kidneys. My focus on the other hand, is on how quickly I can get better so I can continue the fertility treatments. When the conversation turns to the topic of pregnancy, some new information suddenly emerges. One of the autoantibodies I have, SSA, is an autoantibody that can pass from the blood to the placenta when you are pregnant. This can potentially cause heart blockage in the fetus and in some unlucky cases, the child might need a pacemaker. In addition, it turns out that there is an autoantibody I have not been tested for yet that can increase the chance of blood clots and miscarriages. I was not prepared for more bad news. My face bursts into tears and the doctor hands me a paper towel.  |
AuthorA blog about beeing newly diagnosed with lupus. Dreaming of becoming a mum once the disease is under control. I am translating the blog to English so the posts will appear on this page as I go. Archives
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