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

​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#

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 fact that I became sick has impacted the holiday for the whole family, and I have not been a joy to be around these Christmas days. My mood has fluctuated between optimism and courage, and deep despair. With worry in their eyes, my family have tried to cheer me up and make sure I'm ok. Their efforts to stop my intense googling has not been successful. The doctors have warned me not to google too much, but I can't help it. It really is a morbid jackpot of a diagnosis. If I am to believe google it should almost be called "Murphy´s" instead of Lupus, because it looks like everything that can go wrong will go wrong.. At lunch, in the evening, on the sofa, in the car, under the duvet, in Norwegian, in English and at all hours of the day - I'm googling. I google autoantibodies, my test results, the medication I have received, the dosages, words from my journal, I google everything. I have googled my way to the National procedure for SLE and compare the medicines and dosages I have received. Trying to comprehend where I am in the confusing lupus landscape and how affected I am. I throw myself into medical articles and tables without understanding a word of it. Somewhere I read that it is smart to get some knowledge about the disease, but I think I am taking it too far. In a moment of madness, I wonder if maybe I should start studying medicine.​