It must be a butterfly year. I think I have seen them everywhere, lots of them. Maybe the butterfly is very present in my consciousness this year. It sounds drastic when you hear the description of the butterfly effect. That the flutter of wings from this delicate creature could create catastrophic consequences on the other side of the earth. It´s easy to compare this effect with lupus. A small mismatch in some immune cells creating chaos and major consequences for the rest of the body. So major that you have to weaken the entire immune system so that  it doesn´t  kill you.

The mystery of the "switch" for lupus and other auto-immune diseases  is not yet solved, but researchers are working on it. Some believe the solution can be found in Celiac Research. While in lupus, sclerosis, arthritis and other autoimmune diseases they do not know what is recognized as dangerous, in celiac disease they know it´s gluten. Researchers at the University of Oslo have found a special type of T-cell that recognizes gluten in patients with celiac disease. T cells are immune cells that recognize and distinguish between what is dangerous and harmless in the body. The researchers found that the same type of T cell recurs in patients with other autoimmune diseases, including lupus. The hope is that by doing further research on these, they can find out what it is that is recognized as dangerous in, for example, lupus patients. The potential of the research is to eventually find treatment methods that take out only these cells instead of weakening the entire immune system. Now that would a positive butterfly effect! Go University of Oslo!

Sources:
https://forskning.no/celler-immunforsvaret-partner/cellene-som-er-sentrale-for-coliaki-koblet-til-andre-autoimmune-sykdommer/1335291
https://www.med.uio.no/klinmed/forskning/aktuelt/aktuelle-saker/2019/felles-celletype-for-autoimmune-sykdommer.html
https://sml.snl.no/T-celler

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.