 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
0 Comments
Fate would have it that the day before I got the lupus call, I went to the gynecologist to apply for fertiliy treatment in Norway. With my 38th birthday fast approaching and 3 failed insemination attempts, it was time to consider IVF treatment. In the wake of the diagnosis, I have almost forgotten about this application, until today. I received a letter from Rikshospitalet's Fertility Clinic. Rejection of referral. "I am sorry that we are unable to consider your application due to lack of information." The letter leaves me fuming. "MISSING INFORMATION?" I immediately fire off a question to the gyno's office regarding the missing information. Shortly after there's an incoming call. I am suddenly overcome by a vicious anger. All the frustration and disappointments I have felt lately are about to be channeled into this particular phone call. I'm ready to rip his head off and give him a verbal abuse he will never forget. Fortunately, as I answer the phone, I manage to take a few deep breaths and calm my wild rage down to a mild irritation. It turns out that there has been a misunderstanding with the missing information and test results but this will be fixed. Due to the newly diagnosed lupus it will be better to update and resubmit the application. There's a sense of relief when I hang up, unfortunately this will not last for long. A few hours later I get a call back from the gynecologist. He has had a conversation with the fertility clinic and is calling back to inform me that it is unlikely that my application will be approved, due to the newness of the disease and my age. However, I am free to apply if I wish. I manage to confirm that I still wish to apply. At this point it feels like there's an endless parade of bad news waiting in the wing. I have a fair idea of what 2021 will look like ..  I cry more than I like to admit. These dark thoughts come in deep, powerful waves. I don´t know if it´s a side effect of prednisolone or a kind of grief reaction. Today I tapered down the dosage slightly and I feel really lousy. Theres a pale and yellowish tint to my face and my hair looks dead. I could not be at work for many hours before I had to go home again. Can't stand the thought of food, can't stand the thought of anything, just want to sleep. But the dark thoughts is keeping me awake. I lie down on the coach sobbing and crying. Try to knit a little, while I keep sobbing and crying. Put on a washing machine while sobbing and crying loudly to myself. When I meet my own reflection, I sob even louder because of how I look, and even though I feel like a complete idiot for walking around crying loudly to myself, I can not seem to stop.
It is an never ending stream of sad thoughts spinning over and over again. In a particularly dramatic loop of thoughts, I throw myself on the bed. Overly dramatic, but I can not help but push all the buttons I know will hurt. Wallowing in self-pity as tears continue to stream down my cheeks. The pillowcase is dirty and gritty with mascara before it finally comes to a stop. A little later the same day I will get an explanation when I notice in the calendar that "Aunty flow" will announce her arrival tomorrow. In other words, prednisolone taper and PMS is a horrible combination. It is one thing to feel fit and healthy at home when you're managing the day according to your own schedule. But now that I'm back at the office expecting to function like normal, I'm deeply disappointed. I'm just not quite there mentally. My mind feels foggy and I'm struggling with the basics. I´m distracted, lost and it feels like I keep forgetting simple everyday tasks. My colleagues have been informed that I am sick, so I get a lot of understanding, encouragement and patience. Despite the encouragement and nice messages, it's surprisingly hard to get started again. By lunchtime, my mental capacity is exhausted and my head feels filled with fog and cotton. The weirdest thing is that it feels like I´m not looking sick enough, and I´m afraid to appear lazy because I´m only a working half days. And even though physical activity is an important part of getting well and getting back to normal, I feel guilty for maling time for activities while I´m partly on sick leave. In reality, I'm actually being confronted with my own predjudices, and I'm a little ashamed of the times I've thought to myself "You don´t look sick .."  Theres some unread snaps in a Snapchat group. A friend's pregnant belly pops up and the comment makes me giggle. A friend responds with a picture, she is on her way to ultrasound. Is she pregnant too? She confirms when I ask. In our little group of 3, 2 are now pregnant. If my the next attempt in Denmark had been successful, we would all have been pregnant together .. I´m left with a strangely ambivalent feeling. On the one hand I am superhappy for my friend's great news, on the other hand a wave of envy washes over me. It feels so unfair that my own dream is put on hold. "Well, with the prednisolone I´m getting these days, we'll probably all look pregnant soon." I do not press send on that last comment. I don´t want to put a bittersweet filter on the good news. Right now, my life feels like scenes from a movie, and at the moment it's hard to see if it's a movie with a sad or a happy ending.  Foto: Guttorm Wiik
Although the list of side effects is long, it was a relief when the prednisolone dose was doubled and the pain finally let go. Having a body that functions again feels incredible. I am so thankful that the pain and stiffness could be fixed. In addition the high prednisolone dose gives an extra gear at times. Due to the paint in my chest I don't want / dare to run, but I can walk. So I walk. Every single day. The goal is an 1 hour, but if I can only manage 10 minutes, it's better than nothing. Today I got halfway to Løvlia on skis, next time I will get a little closer. Distance and time are really not that important, the most important thing is that I get out and move. The rheumatlogist has given the green light to move, as much as possible. Equally gratifying is the fact that the hands have picked up the knitting again. No stiffness or poain, just fingers running the knitting needles. And while my fingers is making a new beanie appear, I am making plans..   " I followed my heart, and it led me into the fridge" - Unknown The start of January is usually the start of "a new and healthier life", but unlike previous years, there is a much bigger driving force behind it this time. During Christmas, I ordered a book called "A new look at autoimmune diseases - use food as medicine" and today it has arrived. I will not be able to eat the lupus away, but maybe I can influence the disease in a positive direction by focusing a little more on the food I consume. It gives me a feeling of taking back some of the control, and becomes something concrete and tangible I can do for myself. That I am actively doing something to get better.
It turns out that it is not actually a cookbook I have bought, but there's a lot of interesting information in it. Especially what is written about the immune system, autoimmune diseases and leaky gut. Following the steps in the book vigorously is not very tempting. It is a little too strict, and some of it goes a little against what my rheumatologist said about focusing on lean food. I don't want to impose an unnecessarily strict regime on myself. I have to live a little too. So even though it suggests garlic and vegetables from the nightshade family is good thing to avoid, it doesn't have to be the first thing I try. Cutting out garlic, peppers and tomatoes? No,way. I decide on some points that make sense to me in addition to the steps I have already decided to take to counteract the side effects of prednisolon Switch to a glutenfree diet Using olive oil, butter and coconut oil instead Start making broth Cut alcohol Sources: Berit Norstrand, beritnordstrand.no/betenelsesdempende-mat/ Healthline, www.healthline.com/health/lupus/diet-tips#fats Hexeberg, S. & Hexeberg, E. (2019). New look at Autoimmune disease - Use food as medicine. Cappelen Damm John Hopkins Lupus Center, www.hopkinslupus.org/lupus-info/lifestyle-additional-information/lupus-diet/ Lupus Foundation of America, www.lupus.org/resources/diet-and-nutrition-with-lupus#  Since the prednisolone dose was doubled, I have googled side effects like crazy. Moon face and weight gain seem to appear most frequently. Or cushing syndrome as it is also called. In addition, beard growth, mood swings, depression and diabetes are mentioned. As a single woman in my late 30s, I have to admit that I don't want to be transformed into a slightly fat, bearded, "guinea pig" with osteoporosis, mood swings, depression and diabetes.
Vanity, I know, and as the doctor pointed out: "Your focus should be on getting better." And she told me that my looks will probably change a little bit. When I was also told to be careful with sugar to avoid diabetes and try to avoid putting on too much weight, it does not sound very promising. So, can I do something to try to avoid these side effects I asked google. And as you ask, you shall receivce: 1. Reduce salt / sodium intake: corticostereiods messes with the water and the salt balance and makes the body hold onto more water and salt. This is part of the weight gain and can also cause higher blood pressure. Therefore I will make as much as possible from scratch and cut out as many processed products as possible. Soups for example, are light and tasty food that can be made from scratch replacing salt with spices, garlic, chilli, ginger, etc. 2. Limit sugar intake. This was the rheumatologist very clear on. Corticosteroids increase blood sugar levels and in worst case, one can develop diabetes. For a sweeth tooth like myself, this is very bad news! But I guess eating less sweets won't kill me.. 3. Getting enough calcium and potassium To prevent loss of bone, you should ensure that you get enough calcium. I have already received a prescription for this. I read somewhere you need to be a little carefull with potassium if you have a kidney disease, but I have not been told to eat a kidney-friendly diet so for now I think this is probably a good idea. Banana for breakfast anyone? 4. Know how much you have eaten - are you really hungry? Corticosteoroids increase the feeling of hunger and you eat more than you need. If I know that I have eaten more than enough during the day, I will try to go to bed hungry when the evening hunger sets in. 5. Eat food with volume Simply fill the hole in the stomach with lean food that has volume and gives a feeling of satiety. Salad for example. 6. Avoid stress and get enough sleep Cortcosteoroids are stress hormones that puts the body in "fight or flight" mode and these hormones also causes your body to store more fat. Lack of sleep creates more stress. 7. Exercising at the right intensity it's a bit related to the tip above. Hard workouts stresses the body, a bod already in stress mode from the corticosteoroids. Focus on long low impact sessions instead. Someone wrote this in a female forum and it just sounded very smart. |
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
Categories
All
|
RSS Feed