The sun has set on the horizon and dusk is about to slip into twilight.
Shoulders and hips Are hurting, and the headache is growing stronger. Toes screaming in pain for each step, which are becoming increasingly fumbling and indifferent. But this tired, beat up feeling that rushes through the body is not because of lupus. This is the glorius feeling of a body that has been hiking for 13 hours in the mountains. A body that has crossed stony paths,  glacier and mountains to come back down with a huge smile. It´s important to know your limitations, but sometimes you have to push through and reset your boundaries. With the sun shining down from a bright blue sky in Jotunheimen, Saturday was a good day to do just that.

After a somewhat bad night's sleep in the tent, the pulse quickens as we start moving up the path from Krossbu. Slowly settling into a comfortable pace towards Leirbrean. There´s an expectation in the air that the day will be filled with adventure and challenges. Today's goal is Skeie, a trip my friend and I have talked about and looked forward to for a while. It will also be the most demanding trip I have been on since I became sick. Even though I know I'm in good enough shape for it, theres´s a certain nerve attached to it. We are accompanied by two more from the climbing club, so it´s 4 of us moving up the windless glacier. The sun is shining on my  face and the sound of crampons against ice mixes with breath and pulse. The last part of the glacier is a little steeper and covered by a thin layer of snow. The heart rate increases  with the steeper and softer su​rface. It feels like I'm breathing a little heavier than the rest of the group now. Fortunately, there is room within the group to ask for a slightly slower pace.

​I fill my mouth with water, and move it around. I have read somewhere that when you are nervous, your mouth becomes dry and your brain interprets this as being nervous. Keeping the mouth wet is a trick to make the brain think that it is not nervous. «Mouth is wet, ok so I´m so not nervous.» Despite being so smart, the brain seems pretty stupid sometimes too. I take a deep breath and get to work on the yellow climbing holds. Fingers finding grip, and feet pushing the body upwards. 1 clip, 2 clips, 3 clips. The heart beat starting to race. I take a deep breath again and continue. 4 clips. It was on the 5th clip I had to cheat a little the last time. Had to use one of the green holds, but I will not this time. Mouth has become a little dry again. Trying to get some saliva going while inhaling calmly. 5 clips. Yay, made it past 5 clips. Encouraging cheers from below keeps me moving. Move by move, upwards and onwards. 6 clips, 7 clips.

I know the route, I climb it well on top rope, but right now I´m climbing lead.
Climbing lead means that you´re not attached to the top of the wall, but clip the rope in as you go. It´s heavier and if you fall, you fall a little longer. So it´s a little more mentally demanding, but in return the feeling of mastery is greater. As with everything else, it´s all in my head. If the head refuse, the body soon follows. Agility is lost, while nervousness eats away muscle power. Even though I know it's safe to fall, my head often objects when I climb lead. But not today. Today, my head is in the game.

3 more clips, then the top anchor. You´re awesome Lisa! My pulse is racing, fingers feeling sweaty and a little tired. Chalk, falling like snow onto the belayer below. The last holds are a little smaller, but now I'm on a roll, I'm going alle the way up. 8 clips, 9 clips, 10 clips. Only the last one remaining. Slightly nervous, my fingers tightening their grip. 3 deep breaths before I move my foot and go for it. The fingers find the last hold, but just as I am about to pull myself all the way up, it slips. For half a moment I am in the air before my legs hit the wall a little further down. So close !!! A mix of adrenaline and pride rushes through my body as I smile down at my friend holding my life safe and sound in her hands. That was pretty awesome!!

It´s in the climbing gym that I find my favorite form of mindfullness. Thoughts and worries are put aside for a while and you are just completely present. The mind is cleared and the focus is on what you´re doing. Especially when you go a little further out of the comfort zone than you normally do. As I have done this week. After a session like this, I walk out with a feeling of being unstoppable. Ready to tackle whatever comes my way. It´s a refill of mental strength and self-confidence. The feeling I´m walking out with this Friday afternoon, is something I wish everyone gets to feel.

In Greek mythology, Pandora opened the box that released all the suffering of the world, but  hope was left in the box. Although my lupus is quite mellow and behaves quite nicely, it also feels a bit like pandora's box and hope is sometimes the worst part of the content in the box. The lupus has unleashed a myriad of potential dangers and pitfalls that hope desperately tries to clean up and sort out. For every bad news, hope finds a new point ahead to focus on. Something to move forward to. The hope and motivation that has gotten me through the year so far was squashed on the phone today. There will be no trip to Copenhagen this fall. My chance to become a mother will be the one I get from Rikshospitalet. Since I have to be followed up so closely, I am not allowed to travel to Denmark. That is, the doctor doesn´t reccomend it and I follow the doctor's recommendation. The clinic in Denmark would also have required documentation from the doctor about the disease.

This was a big blow, because I was so sure that the disease was so under control that I would be allowed to go. But when a donor closes, you have to focus on the one still open. IVF at Rikshospitalet is still on the list and the rheumatalogist is clearly on my side. So at the next check-up in November, she will have consulted with her colleagues who are experts at lupus and pregnancy, and a statement on disease status will be sent to Rikshospitalet. In addition, all tests indicate that this is under control and the amount of Imurel in the blood is exactly where it should be. So the medication is working. The white blood cell count can fluctuate a bit, so if it stays stable going forward, this bodes well. But even though there is a lot of good news here, I allow myself to feel that life also feels a little unfair right now. Maybe even cry a little. Let it all sink in and process it a little. There must be room for the uncomfortable feelings as well, for me to be able to lift my head and look towards check-up in November. It's only 3 months, 3 months will go by in no time ..

Symbols of fertility have existed throughout human history. Stones, goddesses, and rituals to make the earth or woman fertile. There is a certain power in symbols and today I have found my own that have been hidden away in the drawer in the bathroom. When I got sick, I had to hide the folic acid tablets and ovulation tests. Every time I saw the purple box, it brought  painful, hurtful thoughts and quite often tears. It simply became too powerful and visible a symbol of the dream that was put on hold.

When I now bring them bak from hiding, it´s because they are a symbol of hope. Hope that the the folic acid table will soon be added to the daily pill ritual. Hope that in a few months I may have a positive test in hand and book a plane ticket down to Copenhagen. Maybe it's also a small signal to the subconscious. I have great faith in the effect of the signals we choose to send ourselves in the form of the surroundings and the people we surround ourselves with. The expectation one has for medical treatment can potentially affect its effect. So it can at least not hurt to send the body a subconscious signal that it is time to prep for pregnancy.

Although there are complications associated with SLE and pregnancy, fertility is usually normal in lupus patients. More often it´s the medication rather than the disease. A drug such as hetercyclofosphamide can, among other things, affect fertility in both women and men, while Prednisolone and other cortisone steroids can cause disturbances in the cycle. I have already experienced these disturbances. The cycle, which has always been stable and run like a clock every month, has become more erratic and unstable. That's also why I´m taking out these tests to see that I still am ovulating and when it´s happening. The most critical and crucial thing now is disease activity at the time of conception. Low disease activity at conception is associated with much better outcomes and less complications. As the doctor in the podcast below says (14:56), when the disease is at rest, about 20% experience flare-ups. The flare-up is then usually less severe, such as a rash, and does not require any additional treatment.

In other Words, lots of powerful symbolism in a box of ovulation tests. Now I'm waiting in anticipation for the follow-up conversation with the rheumatologist on Thursday!

It was another type of headache and nausea that echoed through my body when the pill alarm went off this morning. Turns out Miss Lupus is slightly hung over, after a tipsy night out with the neighbor.
It's been quite a while since last time, and I can´t say that it's something I've missed. Although the doctors have said that I´m allowed to have a glass of wine with the food now and then, sticking to the non-alcoholic alternatives have been my preferred option. After all, my kidneys are affected and I´m on three types of medication. Yesterday, however, this caution with alcohol apparently went straight out the window. And when I forced myself to let go of the karaoke machine at 03:00 am, I realized that the plan to get home at a reasonable time also failed quite badly.

When it comes to lupus and alcohol, it´s the combination with the medication that is at the top of the list of concerns. Both with corticosteoriods and Imurel, it´s advisable to be careful with alcohol, to avoid damaging the liver. In addition, alcohol can release stress hormones and the gut bacteria is not too excited about alcohol. Alcohol being bad for us is old news, but alcohol is in fact also a vasodilator. Meaning, it causes the blood vessels to open and relax so that the blood flows more freely. In moderate amounts, it provides a little protection against stroke and heart attack.

My poison of choice is wine. Especially bubbles. The sound of popping the cork and the fizzling sound off filling the glasses has long been associated with girls' nights, celebrations, and good times. After all, life must be lived and enjoyed as well. A nice red wine for this autumn's game dinner, sharing a bottle of white wine with a friend while solving world problems. In between all the new healthy habits and routines, there must also be room for this. Lesson learned from yesterday is that I no longer tolerate alcohol too well. I also make a note to myself that my stomach prefer to have the pills served with food. Falling asleep again with only pills in  my stomach was really not a good idea. But with some food, a bike ride and some fresh air, I´m feeling a lot better. 

Sources:
https://lupuscorner.com/alcohol-impacts-on-the-body-risks-with-lupus/
Https://bindevevssykdommer.no/kosthold/

​The air is slightly crispier as July turns into August. The morning dew feels cooler between my toes as I stroll across the grass towards the rubbish bin. The sight of small green tomatoes that have slowly but surely turning red has brought a smile to my face throughout the summer. There is something pleasantly earthy and healthy about watering, weeding and tending to the vegetable bed in front of my porch. Watch the tiny seeds that were dropped into the soil this spring, turning into big green plants. Cucumber, lettuce, tomato and herbs ready to hit the plate. Peppers and chili that are just around the corner. The Halloween pumpkins need a few more months. The only reluctant occupant of the bed is the butternut squash, which unfortunately does not seem to have female flowers.
 
I feel a little healthier and my shoulders automatically drop, when I step onto the grass to pick myself a plate of greens. Especially when my appetite is nowhere to be found. It's so easy to let go of the healthy habits and reach for the junk. Like today, when my  appetite is completely gone and that icky feeling never quite lets go. When the bowl of Friday's potato chips leftovers starts to look like a perfectly fine dinner option. It helps to have a vegetablebed bursting with salad begging to be eaten before it is too late. It makes it a little easier to choose wisely. Amazing how much joy, well-being and health can be found in a single bed of vegetables.

​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/