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

Sometimes it turns out just the way you want. The appointment at the rheumatlogist became such a thing. She tells me that the summertime unfortunately is the season of flare-ups, but it doesn´t seem like there´s a big and serious flare-up going on. The blood tests are fine and stable and kidney function is still normal. Had mye chest symptoms stemmed from the heart sac for example, it would have been visible on the tests. She prints out my test results and shows me how they are still stable from last time. The doctor's word is pure medicine and she writes a prescription for a cream and solution for the rash. In order not to ruin the vaccine effect from the 2nd dose of covid vaccine, the prednisolone should not be adjusted any higher than it is now, which makes me happy. This doesn´t sound very serious. With a lighter heart and with the test results in my bag, I leave the rheumatalogist.

The printout also contains the antibody test results from April and March, and it is with great interest that I later compare these with the test results from December, when I first received the diagnosis.
From December to April, S-DNA as and S-SM as decreased from 269 and 254.0 to 23 and 25.0, respectively. And even though these test results appear to be in a completely incomprehensible language, they also tell me that my story is a story about a health care system and a treatment that is working! I can´t help but to be humble about how intricate the body is and all the knowledge doctors must possess to treat it properly. The GP who asked the right questions found all the symptoms and ordered the right blood tests. How quickly and efficiently all the referrals went. The rheumatologist that juggles disease, side effects and the desire for children within the medication regime. All the check-ups I get.

And in the midst of all the seriousness, you are greeted with so much warmth and humanity! The rheumatalogist that offers friendly understanding and paper towels for the tears when the news are bad. The health secretary who offers humor and laughter while she attaches the ECG patches. The GP's sincere "How are you?" Cheerful nurses, bioengineers and hospital doctors who call you by name and makes a joke to light the mood. It´s simply impressive how well you´re taken care of. In the time of the harsh comment sections, it´s so easy to get hung up on and focus on the negatives, the failures. So easy to forget that majority of time, things actually work. In the same way, I´ve probably been to hung up on the negative symptoms that appeared and began to fear flare-ups. Instead of focusing on that most of the time I actually feel healthy.

​The butterfly rash is one of the most characteristic symptoms of Lupus. It´s also called "malar rash" where malar is the Latin word for cheekbone. About half experience this rash that spreads over the cheekbones and the bridge of the nose. For some, it´s also the symptom that ultimately points to Lupus as the correct diagnosis. The rash is a sign of active disease or increased disease activity and is not permanent. It often appears in connection with sunlight and those with photosensitivity (SSA antibodies) are more exposed. It´s the most sun-exposed points on the face that are affected, which can give the butterfly-like shape. The butterfly is therefore a frequently used motif in connection with lupus. The same rash has given rise to the name of the disease, but then with reference to another animal. Lupus which is Latin for "wolf" and erythematosus which is Greek for "red". The term «red wolf» referred to the rash that could resemble a wolf bite. The wolf is perhaps a less pleasant, but more appropriate association with the aggressive side of the disease.

This butterfly has unfortunately flown a little too carelessly in the sun, and needs to recharge in the shade. Yesterday's check-up with the GP led to doubling the prednisolone dosage  and the appoting at the rheumatalogist was moved forward from August to tomorrow. There is something schizofrenic about explaining to GP the symptoms you are worried about, while at the same time you´re trying to explain them away in the same sentence. But the GP listens carefully, listens to me, listens to my heart, lungs, and measures blood pressure. An ECG is taken which comes back normal. What I´m describing with the rashes and mouth ulcers indicate increased disease activity. It feels like a step back, but I'm in safe hands. It´s reassuring and comforting to know that I´m taken so good care of. Fingers crossed that it´s a false alarm.

Sources:
https://bindevevssykdommer.no/sle-2/hud-ved-sle/ 
The Lupus Encyclopedia

​The iPhone ringtone breaks the silence of the bedroom. I usually pop straight up when the alarm goes off, but the eyelids feels unbelievably heavy today. The body feels tough, heavy and requires 15 minutes to recover from sleep before it's functional. A giant yawn and a few stretches later, I'm finally in an upright position on my way to the bathroom. The rash is blooming over my cheekbones and doesn't seem to be going away anytime soon. There is a feeling of "something" festering in the body. The mouth ulcer has come alive again, but luckily the showerdrain remains empty. The incredible flow and energy I've felt lately are slowly schreeching to a halt this week. It's in the fickle nature of the disease to fluctuate like waves and I suspect that I'm about to become acquainted with going down the wave again. "The Lupus Encyclopedia" is delivered on my doormat this Friday morning. It looks thicker and more detailed than expected and it pleases my information-seeking nerdy heart. When you first start reading a bit about the immune system, it is actually incredibly fascinating.

You´re advised to familiarize yourself with, and read a little about the disease, but there's a limit to how much information you really need. I told myself early on that I should first and foremost focus on the symptoms I have been diagnosed with and not everything else. On one hand, I want to know enough to take sensible precautions, on the other hand I don't want to dig so far into the matter that I start to look for symptoms and signs of illness. In a way, I've already experienced that I can't think myself healthy. Living under the impression that I was completely healthy this fall, overlooking all the symptoms, didn't make me any healthier. But I strongly believe that both our positive and negative thoughts can effect the body physically. There are studies on both the placebo effect and the nocebo effect that indicate both positive / negative expectations can affect the effect of treatment. I think this is useful to keep in mind when trying to find a balance between managing symptoms and precautions and living as normal as possible. So for now I will try to put aside the idea that there is "something" festering in the body, until the doctor and the blood tests say otherwise.

Sources:
https://forskning.no/sykdommer-psykologi/du-kan-tenke-deg-syk/779562
https://forskning.no/menneskekroppen-medisiner-ny/bivirkningene-ble-verre-da-pasientene-trodde-de-fikk-dyr-medisin/316475
https://tidsskriftet.no/2019/08/debatt/leger-har-placeboeffekt
https://www.webmd.com/balance/features/is-the-nocebo-effect-hurting-your-health#1
https://www.webpsykologen.no/artikler/noceboeffekten/

It's Friday and we're playing Texas hold´em. Feeling pretty optimistic about the cards I get dealt. Of course I have to stay in this round! The first 3 cards are dealt. Bummer, not even close to the ones I was hoping for. The pot is raised. Hand reaching for more chips, there are still 2 cards left that can turn this game around so I'm not out yet..

The phone call I got before this weekend was a new twisted card. It was the rheumatalogist that called back with test results on the second antiphospholipid test. The test that had to be confirmed after 12 weeks.
Antiphospholipid antibodies are antibodies that react with fats or lipid in the blood and lead to an increased risk of blood clots. There are 3 types of antibodies you test for:
Lupus anticoagulant
Anti-cardiolipin antibody
Beta-2 glycoprotein antibody

About half of those who test positve for these antibodies have blood clotting events. The antibodies can also be found in healthy people, and they estimate that 1-5% of the population have such antibodies. This is why the results must be confirmed twice at 12-week intervals, as it may be a temporary positive. About 40% of those with SLE have such antiphospholipid antibodies, but there is also a separate diagnosis associated with these; Antiphospholipid syndrome (APS). Antiphospholipid syndrome is often detected in connection with thrombotic events and recurrent miscarriages.

Mentally, I am already prepared that it is unlikely I will get a different result this time. So it's not a big blow when the rheumatologist tells me that the results are pretty much the same, I've tested positive for 2 out of 3 antiphospholipid antibodies. On a positive note, the titers are not that high and I have never had any blood clot events. However, these antibodies means a significantly increased risk of blood clots in risk situations. Pregnancy will be such a risk situation and there will be an increased risk of miscarriage. Therefore, I will probably be put on both acetylsalicylic acid and Fragmin (blood thinner) if I get pregnant.

When I first heard about the antiphospholipid antibodies, I was devastated. Today, as I'm getting the confirmation that the tests are in fact positive,  I just think of it as information. Information means I can actually take precautions in risk situations. Like pregnancy, and flights over 4 hours. It's a tough card to get dealt, but I still have chips and an ace on hand.

 
Sources:
https://www.revmatismesykehuset.no/behandlinger/antifosfolipidsyndrom
https://revmakompendium.pressbooks.com/chapter/antifosfolipid-antistoff-syndrom-apl/
https://nhi.no/symptomer/blod/antifosfolipid-syndrom/
https://sml.snl.no/antifosfolipid-antistoff

​It's Tuesday, and a regular afternoon ritual on Tuesdays is to refill the pillbox for the upcoming week. Wednesday marks the start of a new pill week. The reason it's Wednesday is simply because it was a Wednesday in December that I started my new life as a pill and corticosteoroid junkie. When the body feels filled with burning cement, there is no alternative to wait until Monday to match the text on the pill box.. 

Tomorrow actually marks a little milestone. I'm tapering down to the maintenance dosage for Prednisolone. Taper complete! I'm finally at the maintenance dosage and it feels like a small victory. 5mg/d felt forever away when I was chewing 40mg a day and tried to google what are high and low doses of Prednisolone.

Prednisolone is actually a chemical version of a so-called glucorticoid hormone that the body produces itself, cortisol. Cortisol is a hormone that the body needs to cope with stress and strain, and has an anti-inflammatory and immune-suppressing effect. This is the effect you are looking for when you are treated with Prednisolone. When you take Prednisolone for a long time, the body eventually stops producing cortisol. That's why you need to taper down the dose, to get this production started back up again. Cutting down too swiftly after high doses and prolonged use can actually be dangerous and lead to serious side effects. My personal experience with side effects associated with tapering is that I have felt unwell and squeamish a few days after the taper. With a new dose on Wednesday, I usually notice on Thursday around lunchtime. Then after a day or two, it's back to normal.

Due to all the side effects, I hope I'll get well enough to discontinue the prednisolone completely. But for now I'm psyched about the last taper!!

Sources;
https://www.legeforeningen.no/foreningsledd/fagmed/Norsk-revmatologisk-forening/pasientinformasjon/medikamenter/prednisolon-tbl/
https://sml.snl.no/glukokortikoider
​https://nhi.no/sykdommer/muskelskjelett/legemiddel/kortison-avslutning-av-behandling/

​June has finally taken pity on us with some long-awaited sunshine and I am embraced by the warm summer air as I leave my cool and temperate workplace. I'm going for a swim, the first of the year. The bikebag is packed with summery ingredients: a large towel, bikini, a basket of strawberries and a book. At the top lies what will be this summer's most important accessory for Miss Lupus, sunscreen, sunglasses and a hat.

"Be careful with the sun and use high spf!" This has been one of the most frequent mantras from the doctors. In addition to avoiding stress, this advice is repeated everywhere when reading about lupus. Because while many rheumatic conditions improve in the sun and warmer climate, with lupus it's the opposite. Particularly high levels of SSA / SSB antibodies can cause photosensitivity and sunrashes. When the skin is exposed to UV rays, cells are damaged, and the immune system initiates a clean-up job to remove the damaged cells. This is something that happens in everyone, but in lupus patients, the cleaning cells don't work fast enough and the damaged cells is left lying around a little too long. The immune system identifies them as invaders and launches an attack to avert the danger. As a result, it's not necessarily just the skin that is affected by sunlight. Too much sun can cause other symptoms such as fever, joint pain, fatigue, etc. to flare up. Worst case scenario, too much sun can lead to internal organs being attacked. In addition, some of the medication used to treat lupus enhance the damage from the sun. Plaquenil, which is the basic treatment, makes you tolerate the sun less, while immunosuppressive drugs such as Imurel can increase the risk of skin cancer.

As with everything else in lupus, there are individual differences of how much sun is tolerated. There are those who have SSA and SSB antibodies who never get sunrashes and don't experience flare-ups, while some can be affected by UV light from lamps inside. I don't know exactly where I am on this spectrum yet. I have noticed that I don't tolerate the sun like I used to. Especially the rashes on my cheeks seems to flare-up and turn red after I have been in the sun, and my eyes feel a little dry and sore in the evening. Sun rashes was one of the earliest symptoms, so you could say I'm on high alert when it comes to the sun and skin these days. But so far so good as long, as I use high spf regurlarly and protect myself with sunglasses and cover my head. Wearing your coolest hat and enjoying strawberries in the shades after a swhim is not half-bad either.

Sources:
https://bindevevssykdommer.no/sle-2/
https://revmakompendium.pressbooks.com/chapter/systemisk-lupus-erytematosus-sle/
https://www.lupus.org/resources/uv-exposure-what-you-need-to-know#

​Switching to a gluten-free diet is something I have chosen by myself. I haven't taken any tests that indicates I need to eat gluten-free and the rheumatologist doesn't think I need to eat gluten-free. The reason I chose to switch to a gluten-free diet was after I read the book called "A new look at autoimmune diseases". The book describes how gluten can have an inflammatory triggering effect on the mucous membranes in the intestine that makes it "leak" and that this may be a contributing factor to autoimmunity. A Norwegian study at the University of Oslo found that the same type of immune cells that drive the disease in celiac disease are also found in high numbers in people with other autoimmune diseases, including lupus. Healthy people did not have as many of these cells, a type of T-cells, which differentiate between what is dangerous and harmless. The study does not say that gluten is involved in other diseases than celiac disease and there seem to be some disagreement surrounding the concept of "leaky gut" and autoimmunity. But keeping these studies in mind, combined with the fact that I have a brother who finally got healthy after going gluten-free, I had to give it a try. 

Replacing the lunch sandwiches with salad, soup or gluten-free crispbread quickly became a habit. And with gluten-free rolls or gluten-free sourdough bread, I don't really miss anything. In addition, there are lots of gluten-free alternatives available, though quite expensive. Overall my digestion is better, and I suspect that some of the weight I shed is because of the gluten-free diet. Some believe that the reason for this is because when you switch to gluten-free, some of the gut bacteria that live on and feeds off the gluten disappear, and that this change in gut bacteria leads to increased metabolism. A Danish study found that gut bacteria adapted and changed when you switched to a low / gluten-free diet. But this, like everything else, is highly debated. Regardless, the gluten-free diet seems to have done wonders for me personally, so I'll be sticking to it.

Sources:
Hexeberg, S. & Hexeberg, E. (2019). New look at Autoimmune disease - Use food as medicine. Cappelen Damm
https://nhi.no/forskning-og-intervju/lekk-tarm/
https://fedon.no/temaartikler/lekk-tarm/
https://funksjonellmedisin.no/2017/09/hva-er-lekk-tarm/
https://www.nature.com/articles/s41467-018-07019-x
https://forskning.no/celler-immunforsvaret-partner/cellene-som-er-sentrale-for-coliaki-koblet-til-andre-autoimmune-sykdommer/1335291

The arm is gently twisted behind the back and my hand is sliding into the chalk bag. A sprinkle of chalk sticks to the forehead as the arm returns to the wall. My fingers find their way back to the crimp and the two upper joints are bending slightly for a better grip. The arm is stretched slightly to relieve the pump building up in my forearm. My breath is heavy and just like me, the pulse is on it's way up. Up the wall, move by move. A finely tuned machinery of tendons, joints and muscles, working together to move this rheumatic towards the top of the wall.
 
Rheumatic. The word is charged with pain, pain from joints and muscles. When I hear the word rheumatic, it instinctly produce an image of slightly crooked and sore hands, arms and joints. Rheumatism is something I associate with age, something you get when you're  older. But as I looked around the waiting room waiting for my first appointment with the rheumatologist, it struck me that many of patients in the waiting room were not very old. Not particularly crooked either. I began pondering what their situation was, because most of them looked pretty healthy on the outside. Still, like me, they were sitting in the waiting room at the Rheumatalogy ward. And that was when it struck me, am I a rheumatic now? Maybe it's me who needs to update my notion of what a rheumatic actually is?

SLE is a rheumatic disease, and there are actually over 200 different rheumatic diagnoses. In Norway, there are about 300,000 living with rheumatic disease. Quite a few, and there is a separate interest organization for those with such a diagnosis, the Norwegian Rheumatism Association.

Examples of rheumatic disease:
SLE
Rheumatoid arthritis
Bekhterev
Systemic Sclerosis
Fibromyalgia
Poliomyocyte
Osteoarthritis

Many of the rheumatic diseases are chronic autoimmune diseases, while some are diseases / conditions that come with age (osteoarthritis) or overload (tendonitis). The rheumatic umbrella is large and is therefore divided into several subgroups. Lupus / SLE is in the subgroup called systemic connective tissue diseases. In connective tissue diseases, the immune system attacks the tissue found in and binds the organs together. My slightly simple opinion that rheumatism is the same as gout is in other words not entirely true. But the common denominator is ailments from the musculoskeletal system, such as pain and stiffness in joints and muscles.

Sometimes you take it for granted that the body will always function as you have been used to, but it is not a matter of course for any of us. The biggest upheaval with the diagnosis of lupus is the new way of interpreting the body's signals. They automatically go through several filters before they can be dismissed as everyday minor ailments. Is the stiff neck a result of a sleeping position or the recently adjusted dose of prednisolone? That point in the thigh, it can not be the beginning of a blood clot, because how does a blood clot really feel? Are the shoulders sore due to the backpack this weekend or is there something else that has started to smolder in the muscles and joints?

Maybe I probably feel a little too good after a while. Can not completely shake off my fear that I will dismiss something serious as a trifle again. I find solace in the fact that I am followed up very well by the doctors. If the disease begins to recur, it will be detected by the regular check-ups and blood tests. Strictly speaking, it can not be too bad right now as I am hanging here in the wall. But to be on the safe side, I might drop the housework today!

Sources:
Gran, J. T. (2008). Definition and classification of rheumatic diseases. Norwegian Epidemiology, 18 (1): 3-4.
https://nhi.no/sykdommer/muskelskjelett/giktsykdommer/leddgikt-symptomer/
https://sml.snl.no/revmatiske_sykdommer

The clouds are playing around the peaks of Smørstabbtindene, but as we are approaching the summit of Storebjørn they pull aside to let the sun shine down on us. We have taken off our skis and are on our feet for the last few meters to the top. I breathe a little heavily and feel my heart race a little extra while my feet are working their way up through the snow. Finally, I am at the top plateau with the group. It is a glorious day for ski touring, and despite the endless row of skiers making their way up to Storebjørn this day at this particular moment we have the peak to ourselves. Standing up here again feels like an official recovery milestone. My heart rate drops back down and take in the sights of Jotunheimen's white-clad peaks against a blue sky. The gaze is drawn towards the neighboring peak Veslebjørn. There is an idea within the group that we will go up there after this. The thought is tempting. A trip up Veslebjørn will mean a new 2000 meter peak in the peak collection, and a new Smørstabbtind that can be "checked" off. But my body is tired and tomorrow theres another day of skiing that I don't want to miss out on. 

There is no harm in being active and get tired when you have lupus. Physical activity and exercise are strongly encouraged since the disease makes you are a little more prone to cardiovascular disease. Activity that strengthens the heart and lungs is beneficial. Cardio is also considered to be positive to battle the famous fatigue that I have heard so much about, but luckily not experienced yet. My hope is that by keeping the activity level up I can keep it at a bay for a little longer. It is recommended that you build up the shape gradually. Pushing too hard, too intensely, too fast can potentially lead to flare-ups. This is what's on the scale when Veslebjørn is over there and shouting: «Come on! Don't be a loser! You're not weak, are you? "

But am I actually able to go up on Veslebjørn today? Am I going to push it a little too far down if I do? The thoughts are weighed against the victory of getting a new top in the collection. In the end, I come to the conclusion that I am satisfied with conquering Storebjørn. We agree that I will set up a nice spot and take a break in the sun while the rest of the group continues on to Veslebjørn. An hour, two coffee cups and a roll of chocolate later, they show up tired and happy at my spot. And even though I feel a slight defeat of having to pass on Veslebjørn, my legs feels fresh and strong for the skiing down Leirbrean. Veslebjørn will still be there later, and as I swoosh down the powdery snow , I celebrate with a joyful squeal that preserving the energy for this, was exactly right today. 

Sources:
​Lupus Org UK https: //www.lupusuk.org.uk/lupus-and-exercise/ ​