​It's a roller coaster, a fucking corticosteoroid roller coaster!
An unanswered call from the rheumatologist, the same day I had taken blood tests, left an eery warning in the back of my head. When the nurse called me back today I was hoping to hear that everything looked fine. But no. The white blood cell count has dropped since the tests June, which may indicate disease activity. It's the exact opposite of how I feel, I feel great, but the blood tests and the doctor says otherwise. So they need to take some more blood tests, so called "TDM", therapeutic drug monitoring. Meaning they want to see the level of medication in my blood to see if I have sufficient  effect of Imurel.

Another word for a decrease in the number of white blood cells is leukopenia. Leukopenia does not necessarily cause symptoms, but with fewer white blood cells, you are more prone to infections. The condition can be due to antibodies attacking and destroying the white blood cells, but can also be a side effect of, for example, immunosuppressive drugs such as Imurel. Leukopenia gives 1 "point" on the SLEDAI score. So if all other tests are normal and neither mouth sores nor rashes have worsened then I hope and believe I'm still below 6 (mild activity). It must have been under 6 for at least 6 months before I try to get pregnant. In my head I'm still planning a trip to Denmark this fall. So fingers crossed I don't have to change medicination, since Imurel is the one that can be used during pregnancy.

So now I'm back at 10mg of prednisolone for 2 weeks, before I taper back down again. So far, I have not been too bothered by side effects, and 10mg is not a very high dose, I think. What's more annoying is that it seems to affect my mood, for better and for worse. Especially when the dosage is adjusted. PMS? Great, let's amp it up a few notches. Storm in a teacup ahead. Guess that's why these little white pills have been nicknamed «Devil´s tictac» ..

Sources:
www.medicalnewstoday.com/articles/320299#causes
lupuscanada.org/resources/fact-sheets/blood-disorders-in-lupus/

​In the garden at my mother's house I have taken out an old rocking horse. It's a wooden rocking horse from the 50's, that had seen better days when I first got it. The rocking horse is a renovation project that was started last fall, but was put on hold. Now it has been brought back out again this summer, due to a growing expecation. In less than 3 weeks, there is a new check-up at the rheumatologist and one particular question is on my mind. Can I book a new appointment in Denmark this fall?

A little over a year ago, I sat and watched excitedly when the Storting voted to change  the Biotechnology law. Leading up to the vote, one could see in the comment sections that this is a controversial topic for some. The changes made it possible for single women to get fertility treatment in Norway. The passing of this particular point in the new law was the most uncertain. When the new law was passed on 08.06.2020, I was already in the process with a fertility clinic in Denmark, but  extremely happy this would now also be allowed in Norway.

Deciding to become a solomum is a process, and not something taken lightly. The idea of ​​the traditional family is strong and is something you almost take for granted will happen by at some point. But life can not be coerced into neatly arranged plans. Initially, I thought to myself that if I had not met the man of my dreams when I was 35, I would do it on my own. But it would take another 2 years before the idea was fully matured and the choice was made. Naive, as you are, you think that when the choice is made the rest will follow suit. But nature is fickle and 3 attempts later I was still not pregnant. I had not imagined I would have a lupus-shaped hill to climb. Some doomsday prophets from the comment section will say that it's nature's revenge and that I got what I deserved. In one of my darkest prednisolone moments, I was thinking the same .. But no one is guaranteed a life free from sickness and death, not even those who form a family in the "normal" way.

Fortunately, today there is room for many types of families and with all the support and encouragement I have from the people around me, this will  turn out just fine. While the rocking horse is getting the first layer of adhesive primer, I cross my fingers and hope for a thumbs up from the rheumatologist.

​I'm lying in my sleepingbag looking out of the tent opening. Waiting for the sun's warm rays to hit and dry up the night's dewdrops. In the awning is a coffee cup. There is no rush to get out of the sleepingbag. There is no urgency on this trip, no deadline to get started. There is no peak to climb, no ridge to be crossed, no timelines or deadlines.  Only my mom and I on a mountain hike. A mountain hike in at a slightly lower pace. With waffles on the primus stove and sun on our faces. Like the snail, we have our house on our backs, and at a similar pace we will move down from Sognefjellshytta, through Utladalen and back to the car in Hjelle.

The pill alarm goes off and I reach for the pillbox in the top lid of my backpack. The alarm goes off twice a day and is an absolutel necessity when everyday routines are replaced by carefree vacation days. It's surprisingly easy to forget my medication, now that I'm feeling so healthy. On the way to Hjelle, I discovered that the morning dose had been completely forgotten and ended up with corticosteoroid in the evening instead of breakfast. It probably did not make it any easier to fall asleep in the car. So when the pills are now easily accessible as the alarm goes off, just pull them in.

We take in the mighty landscape as we stroll down the lush valley. There's nothing to be achieved, no rush. There's time for a morning swim in the river, to notice all the butterflies and bumblebees. Time to enjoy the view of snow- and glacier-clad mountain peaks against clear, blue skies. There's no doubt my mother and I have quite different levels of physical fitness and mountain experience, so in this scenario the roles are a bit reversed. In the same way that my mother has cheered me on throughout my life, I now cheer my mom on through Jotunheimen. With a supportive hand and encouraging words through the toughest parts.

There is something nice about hiking in this way as well. On someone else's terms, seen through somone else's eyes. It makes me look forward to the next check-up at the rheumatologist. Cause this time I will ask if I can make aappointment in Denmark this fall ..

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/

The Kombutcha scobyes are bubbling content and happily on tall glasses, while the sourdough starter has begun to look a little grumpy in the fridge. I making a last attempt to cheer it up leaving it out on the kitchen counter, but am afraid it will soon begins its journey towards its final destination in the trash can. On the stove a a pot of broth is beeing prepared and I have just finished a new attempt to make kimchi. Last time I didn't get it quite right and got a little sick. . But tonight I'm armed with a book on fermentation and this time it looks right. It would be nice if I manage to avoid giving myself foopoisoning considering I'm on immunosuppressive medicine this time.

The reason my kitchen is rumbling, bubbling and brewing is because I'm trying to befriend my gut bacteria. Most of the immune system is found in the intestines and the composition of gut bacteria affects health. One study compared lupus patients with healthy ones and found that lupus patients generally had more leaky gut and fewer types of bacteria in the gut. One type of bacteria, on the other hand, Ruminococcus gnavus, they had 5 times as many of. This bacteria was especially prominent in those who had flare-ups and kidney disease. The same study discovered that the antibodies that attack their own DNA also attack this specific bacteria. The theory is that the antibodies that are supposed to attack these bacteria leak through the intestinal wall and further into the body where it triggers an immune reaction. This same bacteria is also thought to be linked to flares in other autoimmune diseases such as Chrohn's.
 
It's with this in mind that I try to spruce and liven up the kitchen, focusing on food that makes the gut happy. Such as naturally fermented foods. There's not much life in the bonebroth, but the idea behind the broth is that the gelatin that is extracted from the bones lubricate the intestine and makes it a little less "leaky". And some happy news for this chocolate lover, dark chocolate (86%) falls into the category of fermented food. Now I'm neither a doctor nor a nutritionist, but I'm pretty sure that the dark chocolate I'm sprinkling on tonight's dessert is a spoon full of health. .


Sources:
Enders, G. (2018). The charm of the gut. Cappelen Dam
Hexeberg, S. & Hexeberg, E. (2019). New look at Autoimmune disease - Use food as medicine. Cappelen Damm
https://www.lupusresearch.org/bacteria-gut-may-cause-lupus-shows-study-supported-lupus-research-alliance/
https://www.lupus.org/news/the-gutlupus-link-how-gut-bacteria-may-impact-disease-development-and-activity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6901743/
https://www.the-rheumatologist.org/article/to-understand-lupus-study-the-gut/
https://www.pnas.org/content/116/26/12672
https://ard.bmj.com/content/78/7/947