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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 .. 
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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.  The fact that I became sick has impacted the holiday for the whole family, and I have not been a joy to be around these Christmas days. My mood has fluctuated between optimism and courage, and deep despair. With worry in their eyes, my family have tried to cheer me up and make sure I'm ok. Their efforts to stop my intense googling has not been successful. The doctors have warned me not to google too much, but I can't help it. It really is a morbid jackpot of a diagnosis. If I am to believe google it should almost be called "Murphy´s" instead of Lupus, because it looks like everything that can go wrong will go wrong.. At lunch, in the evening, on the sofa, in the car, under the duvet, in Norwegian, in English and at all hours of the day - I'm googling. I google autoantibodies, my test results, the medication I have received, the dosages, words from my journal, I google everything. I have googled my way to the National procedure for SLE and compare the medicines and dosages I have received. Trying to comprehend where I am in the confusing lupus landscape and how affected I am. I throw myself into medical articles and tables without understanding a word of it. Somewhere I read that it is smart to get some knowledge about the disease, but I think I am taking it too far. In a moment of madness, I wonder if maybe I should start studying medicine.
At 08:00 I show up at the emergency room to be admitted for a kidney biopsy. A gentle nurse greets me and shows me to a hospitalbed and puts what looks like a "tap" on my hand. Veneflon she calls it and gives me a cup to pee in. They take som more blood tests and measure my blood pressure. A printout of my journal is lying on the bed and I sneak a peak at it while I wait. I don't really understand much of what is written, but I manage to google that alopecia means hair loss. Eventually a nephrologist shows up and talks to me about what's going to happen. Although the rheumatalogist was pretty certain I have lupus, I'm thinking it doesn't hurt to ask this doctor as well. Unfortunately, he also seems pretty sure that it is the right diagnosis.
A part from the increasing morning pain in my joints and the stinging in my chest, I actually feel pretty good. As they take me up to the ward I'm feeling a little too healthy to be pushed in a hospital bed. The whole thing is a bit confusing and surreal, and mentally I feel out of place. Even though I have an iPad, a book and my knitting to keep me entertained, for the most part I'm just looking out the window. There is a foggy haze and snowsprinkle in the air. My thoughts are drawn to the skiing season. Will I have to sell my randonee skis now? The hiking and climbing equipment too? What about knitting and sewing? Will I be able to pursue any of my activities and hobbies? The train of thought is interrupted by a new round of blood tests. I keep slumbering and waiting. A few texts pops in. Mom is wondering if I've had anything to eat yet. A fun video clip from a friend. Some encouraging snaps from a group of friends. Eventually, it turns out there is some good news. A new nephrologist drops by. He asks how I feel and how if I'm holding up ok. I admit that I'm a bit shocked by it all and ask him if they are sure it's Lupus. He confirms with a nod, but actually has some good news for me. My kidney function has normalized since yesterday, and by the looks of it there is no need to perform a kidney biopsy at this point. They might need to do one later, but as of now there is no need to stick a needle in mye kidney. After conferring with the rheumatalogist, they want to send me home and start me up on medication. Shortly after I am merrily skipping into the hospital pharmacy with my prescription and a big smile to buy medicine and pill box. I actually pay more for the pill box than the medicine and feel incredible grateful for being born in Norway. I'm excited for what feels like a little Christmas miracle. The worst is over - it's all upwards and onwards from here! It's Monday morning and I'm sitting outside the laboratory in the hospital. I got a queue ticket and a glass of my own urine in my lap. My hands are close to useless and clinging to the jam jar, marked "Fairytale Taste". A horrific scene of the glass slipping through my fingers and smashing against the floor is unfolding in my mind. A familier looking doctor exchanges a few words with the bioengineer. Turns out it's my cousin. I greet him with a slightly too loud and weird voice, acutely aware of the glass of urine I am holding. The referral for examination went quickly, so after I have taken these blood tests and delivered the urine sample, I have an appointment with the Rheumatology Department right after lunch. After everything I have read about lupus over the weekend, I have come to the conclusion that there must some sort of misunderstanding or mix-up. It is a fairly rare disease so it seems highly unlikely that I suddenly have this. I am actually quite calm while I'm waiting to be called. I'm looking forward to the error being cleared up and telling my family it was all a false alarm. So when the doctor tells me that there is absolutely no doubt that this is Lupus, I can't help but to break down crying in disbelief. She pulls out a papertowel for my tears while she shows and explain the test result to me. There is a fairly high titer of autoantibodies that are quite specific for lupus. Combined with the clinical symptoms, there is no doubt that it is lupus. I try to compose myself and listen to what she is telling me, but my mind is nothing but chaos. The words "most people with lupus live long, normal lives" is lingering in the back of mye mind trying to break through the chaos, while the doctor continues the examination. She examines my joints, the mouth ulcer, looks at my scalp and asks about the hair loss and sunrash. She feels my ankles for swelling and inspect my skin for rashes. She listens to the lungs and heart and asks about the stinging I've been feeling in my chest. Turns out I have had all these symptoms, and somehow manged to explain them all away. My body has been trying to send me so many signals, and I have not been listening. I didn't think I was sick, I was trying to get pregnant! When I ask about when I can try to get pregnant again, she has to pull out the paper towels again. The disease must have been in remission or low activity for at least 6 months before I can even think about getting pregnant. I realize that there will be no new attempt until next autumn, at the earliest. By then I will be 38, fast approaching 39 .. There is no point in holding back tears. In an instant, all my plans are laid in rubble and the future suddenly looks completely different than it did just a few days ago. But the doctor is more concerned about my kidneys than my pregnancy plans. There is protein and blood in the urine, which indicates that my kidneys are affected. She has talked to the nephrologist who recommends that a kidney biopsy is done. They want to see how much the kidneys have been affected and I will be admitted for this procedure the next day.  It's a pretty ordinary Friday. The last Friday before Christmas. 13 days remaining of 2020, the year of covid-19. The grass is still as green as it was this summer and the weather is 50 shades of grey, as it has been the last couple of weeks. There is not much resembling December, except for all the Christmas lights. The dashboard shows 08:40. My foot press a little harder on the gaspedal. A couple of more turns left. I went by the doctors office on my way to work and am running a little later than usual. They needed a few more bloodtests and a urine sample. A eery warning went off in the back my head when the doctor asked me to come back in for a few more test and a talk. But the women who drew my blood this morning assured me sometimes they just double check to rule something out. It can't be something serious. Its probably some sort of angry bacteria trying to set up shop in my hands. The knot in my stomach is not completely convinced though. A flash in the corner of my eye, draws attention to the passenger seat. A call from the doctors office lights up the mobile screen. I have to take this. My fingers fumbling a bit to get it on speaker. The doctor's tone of voice quickly reveals that this was not just a double check. There is a soft compassion behind his carefully selected words. It reeks of bad news. He has talked to a specialist, and there are some quite significant findings in my blood tests. It becomes obvious he would have prefered to had this conversation in his office and not over the phone. I should probably have waited. Theres a sinking feeling in my gut as I turn the car into a bus stop. My thick, swollen fingers look like tiny sausages as they cling a little harder to the steering wheel. Waiting for the word «arthritis», my grandmother's hand flashes before my eyes. -They suspect Systemic Lupus. The words breaks up the image of Grandma's hand. Lupus? I think I have heard the word before, but it means absolutely nothing. Can't remember the context I heard it. It sounds like an STD. -You will be referred to a specialist for further examination. The fertility treatments in Danmark has to be paused until this is under control. That last sentence is a punch in the gut and the remainder of the conversation is on autopilot. No no no! This can't be happening. Everything was lining up so perfectly for the next attempt. As if it was meant to be successful. I finish the conversation. Shocked and empty inside I turn the car back on the road again. I try my best to look normal when I get to work. My head is spinning while turning on the computer. Need to google now. "What is Lupus?" As the search is loading, that sinking feeling in the gut explodes. An illustration of the body appears, arrows pointing everywhere. A picture shows a woman with hectic rashes on her cheeks. It becomes quite clear that Lupus is in fact not an STD but a serious autoimmune disease. By the looks of it my immune system is going crazy and has started attacking the body. What the hell is this? This must be some sort of mistake? I can't have this disease? Even though I am convinced there must be something wrong with the tests, my eyes are starting to fill up. I lower my head behind the screen and try to silence the sob that's starting to build up. The Google result is a really depressing read. A page says something about a 50% survival rate after 5 years. I make an awkward attempt to work, but my my gaze keeps going back to Google. It's not even half past ten before I give up. Putting on a "yay-its-finally-weekend-face", mumbling something about buying Christmas presents. As I drive out of the parking lot, I can't hold back the tears anymore. They will not stop before dinner..  Et av de første bildene som dukket opp i søket, fra Medical News Today
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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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