 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 .. 
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It's 30 minutes before my phone consultation with the rheumatologist. Last check-up, my test results were so good that I don't need a physical appointment. While I wait for the clock to strike 10:00, I google what the most common finding in kidney biopsies in lupus patients are. After reading the abstract from two studies I find (Wen, 2011 and Kar & Ganiger, 2019), I'm mentally prepared that the most common finding seems to be class 3 and class 4. Of which class 4 is supposed to be the worst. Still, I have an underlying feeling that I won't get any really bad news today either. I'm feeling great, and my test results were so good last time, it would be weird if this has suddenly changed dramatically. But I try to keep my optimism in check, before these chek-ups. «Drammen Hospital Rheumatalogist». The call lights up the phone screen. After a 20-minute conversation, I call my mom smiling. The doctor is very happy with the test results and the disease activity is now even lower than last time. Regarding the kidney biopsy, there were not enough glomeruli in the tissue sample, so they could not classify the nephritis. The glomeruli are tiny clusters of blood vessels of which there are about 1 million in each kidney (large medical encyclopedia). The clusters filter and purify the blood and this is where the infamous autoantibodies can decide to settle down and make havoc. They study these clusters under a microscope and look for changes. Although there were not enough of these to classify the nephritis, it was enough to confirm the lupus nephritis diagnosis. But, since I respond so well to the medication and the tests are back normal again, I don't have to worry about the kidneys, nor do I have to take a new biopsy. Protein is no longer leaking into the urine and it all looks very promising! In other words, there is every reason to smile! So I can consider myself healthy for now and we'll just have to see how it develops. The next check-up will be in Drammen in 3 months. The most important thing going forward is protecting myself from the sun and avoiding stress. "Poison stress is" - Yoda  Sources:
Kar, D. P. & Ganiger, V. C. (2019). Renal biopsy findings in lupus nephritis and their correlation with clinical and biochemical parameters. Kidney International reports. VOLUME 4, ISSUE 7, SUPPLEMENT, S317, JULY 01, 2019. https://www.kireports.org/article/S2468-0249(19)31017-4/fulltext Wen, Y. (2011). Renault biopsy findings in new-ondet systemic lupus erythematosus with clinical renal disease. In. Urol Nephrol, Sep; 43 (3): 801-6.doi: 10.1007 / s11255-011-9911-3. Epub 2011 Feb 20. https://pubmed.ncbi.nlm.nih.gov/21336956/ It's neither shower scenes nor movie psychos that makes me vary of the shower drain. It's the hair int it. Or rather, the amount of hair in the shower drain. Losing hair (Alopecia) was one of the early symptoms I got. Incredibly enough, it was also one of the early symptoms I did not notice. That is, I did notice a few times that it had to be emptied more frequently, but I thought it was because I have blond hair strands, and sometimes you shed a little extra. I even found a reasonable explanation for the thinning of hair at the front of my head. I blamed it on the hydrocortisone I used on the sunrash, that it burnt the hair away. (Yes, the sunrash also turned out to be a symptom ..) It is only now afterwards when my hair has started to grow back that I can see how much I actually lost. The reason for losing hair is because the immune system attacks the hair follicles and the hair falls out. Usually the hair loss is temporary and grows back, but sometimes scarring can cause the hair loss to become permanent. That's why I have become a little sensitive about the shower drain. So when I'm in the midst of shower this evening notice the water is flooding the bathroom floor, there's only one thing going through my mind; «Its back». The lupus must have woken up again and the rheumatologist will ramp up the dosages again this Friday! With my hair full of conditioner and my head in full crisis mode, I'm frantically splashing around trying to steer the water back towards the drain. Finally, I get control of the water masses and inspect the drain, looking for hair. On closer inspection, it turns out that this is more of a job for a plumber than a rheumatologist ..  "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's strange how quickly you adjust and get used to things. What felt like an unmanageable bomb a couple of months ago is now an unproblematic thought. The autoantibodies that felt like a death sentence on the dream of becoming a mother, no longer worries me the same way. It's the new normal that I will be a highrisk patient when I get pregnant, and I have come to terms with that. My gaze is wandering through the waiting room at the maternity ward in Rikshospitalet. I'm waiting to be called in for a preconceptional conversation. I am thrilled to be sitting here. 3 months ago I was told that my application would probably be rejected. Part of me is a little nervous that something new has emerged, but I don't think I'll be getting bad news today.
The nervousness evaporates as I'm called and step into the office of a cheerful and friendly woman. It feels like the whole room is filled with optimism and even though it's a serious conversation and a serious topic, I'm filled with the same optimism. There are several potential complications associated with pregnancy and SLE. It is very important that the disease is under control and that the disease activity has been low for at least 6 months before I get pregnant. Since I am Ro-positive (SSA autoantibody) there is around 2% chance of heart blockage in the fetus. As a result they will be listening at the baby's heartbeat every week from week 16. In addition, I will be put on blood thinners from week 12 to reduce the risk of preeclampsia (pregnancy poisoning). I will continue on the medication I am currently taking during pregnancy, as pregnancy may increase the risk of flare-ups. I am informed that the disease carries a higher risk of growth retardation and premature birth. The list of high risk and potential complications feels long. But the doctor emphazies that now I'm beeing told everything that might happen, usually it doesn't happen. With close monitoring, the vast majority of these pregnancies is sucessful. And this one will be to! When I leave the office, a huge weight has been lifted off my shoulders. The landscape is coloured in a shade of spring and the sun is shining warm and bright in the sky. It's almost 4 months since I was diagnosed with Lupus and I am on the bike making my way down to Steinsletta. The body feels light and free. In the bag there's some bags of seeds and a bag of seed potatoes. A box of Jerusalem artichoke seeds is on its way in the mail from Kristiansand to Hønefoss. I have borrowed a plot of land where I can grow vegetables and am on my way to plant my seeds. As I put the shovel in the ground, there is no trace left of the person that spent Christmas in pain on my mum's couch . Hands, arms, back, everything works as it should and slowly but surely rows and beds are appearing in the soil. Soon they will flourish and nutriuos vegetables will start to grow. There is something therapeutic about it all. The body works, the mind is cleared and the end result will be on the dining table this autumn. Maybe this is the kind of work I need more of?  These are the doctor's own words in the medical record, "Excellent general condition, healthy appearance". This time I'm actually getting great news in my check-up appointment. Finally!! The doctor is smiling and seems happy as well. It looks like my body tolerates the medication and it's working. My hair is growing back and there are no bald spots showing through. I have lost weight instead of gaining weight, my blood sugar has remained stable, and the infamous moon face never appeared. There's no results from the kidney biopsy yet, but kidney function is normal so I will continue on the same medication. At the previous check-up, the disease activity was classified as moderate, when I ask this time it is low. Disease activity is low !! I have dreaded this check-up. It has felt like there's unpleasant surprises around every corner of this disease, so I was nervous about what was waiting for me this time. But this time, it's all good news. The next check-up will be in 8 weeks and can be done over the phone. That must be good sign as well! I 'm all smiles as I'm skipping out from the Rheumatology ward. I'm healthy!  Foto: Guttorm Wiik
As I'm walking towards Rikshospitalet from the parking lot, I'm trembling with expectation. I am excited and nervous because today I have time appointment where it will be assesed whether I'm a suitable candidate for IVF treatment, as a single woman. What questions will be asked? What will they say? Will I be defined as unsuitable? That will be the worst possible outcome, that I will be deemed not suitable to become a mother because I'm sick. Before I went to Denmark, I went through a number of thoughts and considerations about becoming a mother on my own. In some ways I have probably thought this through more than most people, who do it the "regular way". Since I got sick, many of the same thoughts have popped up again, with the disease in mind. Being alone will make this child more vulnerable if something happens to me. But the prognosis for Lupus indicates that I will most likely live a long and fairly normal life. And life can happen to anyone. Even the healthiest and fittest can end up in accidents and vanish. Should the fact that something terrible might happen stop us from having children? With this train of thought running in my head I'm called into the doctor's office. The feeling of going for an audition disappears as soon as I enter the office. There is a friendly and humane tone in her voice and the way she asks the questions makes me relax. She asks thorough questions about my diagnosis and treament. After an ultrasound examination the appointment is coming to an end, and the conclusion is; I'm a suitable candidate for IVF and will get an attempt. The waiting list for a spermdonor is long, and the waiting time is about 12 months, but at least I am on the list!  It's early morning at the hospital check-in post and I'm greeted by an energetic lady. She has a hospitalbed ready for me, but need to take a few blood tests first. They need to see if there is anything in my blood indicating an increased risk of bleeding. The waiting room looks a lot like of a living room with large, deep sofas, candles on the tables and pictures on the walls. A muted TV is showing the morning news, summarizing yesterday's covid-19 numbers. I wait for a few minutes before a nurse shows up to take the blood tests. A few minutes later, the energetic lady comes back and measures my blood pressure. 117/75 which is good. If it was over 140, it would have been too high to take a biopsy, she explains. Since I need go to the bathroom, she gives me a cup to collect a urine sample. Nephrologists love urine samples, she says with a smile. I have been fasting since midnight so I am relieved to hear that the kidney biopsy is at 10. The small glass of water I was allowed with my medication this morning was not nearly enough. A slight throbbing in the head and stomach makes me look forward to getting something to eat and drink when the biopsy is over. The biopsy itself is at 10:00 and will take about an hour. While I am lying and waiting, I see 2 surgeons pushing a small bed that must be a small child who has just had surgery. It sort of puts my whole little biopsy procedure in perspective. Right now at this very moment, small children are being treated for cancer and are being operated on. And here I am, a grown woman dreading a little pinch in my muffintop. Soon enough it turns out that a kidney biopsy really is nothing to be afraid of. First, they find the best spot to take the sample by taking pictures from several angles. While this is being done, I am asked to take a deep breath and hold it until the doctor signals. I will be doing the same when the sample is taken. Finally, they have located the sample spot, and I'm lying on the side. The spot is washed with a liquid and a cloth and something that feels a bit like a heavy frame is put on top. A syringe with sedation enters the flesh and I feel a small sting. The doctor explains that there will be a clicking noise when they take the sample and demonstrate. Then they start the procedure. There is no pain, just a strange feeling that something is going on there. Then I am asked to take a breath and hold it. "Click" and I still feel nothing. On sample done. They take another sample is taken and the nephrologist comes to check the samples. I overhear that they can take 3 samples, maximum 4, but the nephrologist is happy with the 2 samples. There is a little bleeding after the 2nd sample and they book me in for an additional check-up in 3 hours and some extra blood tests. I am assured several times that this is something that can happen on occasion that there's nothing worry about. I am not allowed to eat until after the 2nd check-up, but I am allowed to drink water. Thank god, because I am terribly thirsty! At 11:00 it's all over and now I'm on 24 hours of bed rest. The reason for this is to keep my pulse and blood pressure low to keep the bloodflow to the kidneys at a minimum. In other words, I don't even get to go to the bathroom, which means that I have to go in a bowl in bed for the next 24 hours.  Freshly painted nails for my kidney biopsy There is warmth in the air and the sun is shining as I put the skins on mye skis. There is no sign of the freezing temperature and wind that has been forecasted. Since the kidney biopsy next week will put me out for a while, I want to make the most of this weekend. So this will be this year's first ski touring trip, and I am standing in a parking lot in Hemsedal. There is a certain nervous anticipation associated with this trip. Am I in good enough shape for this now? It´s a small group and patient people, so I'm not afraid to disappoint anyone. Other than myself, but I feel ready for this. The weather forecast reporsts low tempratures and a bit of wind, so I have a heat pack for the gloves and socks to avoid frozen fingers and toes (Raynaud's phenomenon). Based on the weather in the parking lot, I may have dressed to warm with the insulated pants. Usually get really warm on these kind of trips, but I'm not sure if that´s different now. We put on our skis and start heading towards Skarvanfjellet. Slowly but surely we´re making our way upwards. As we get a little higher, the weather is starting to look more like the weather forecast. I'm glad I put on the warmer pants and tighten the hood on my jacket. The wind is frisky, noisy and coming straight at us. We are sliding along silently, within our own little bubble. Being in this kind of weather is Harder on me than anticipated, but I am determined to get all the way up to the top. Enticing myself with small imaginary prizes as we move along "If you get all the way up you'll get good news soon" As we´re getting closer, I start to realize I will actually make it all the way up. Tears of joy are making their way out and as we reach the top, I can´t hold it back any longer. My friend comes running over looking concerned, but quickly realizes that these tears of joy not pain and joins the celebration. Because this, this feels like a really big win!  |
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
November 2021
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