 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
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 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/  The soil feels moist and sticks to my pants while I lie on all fours in front of the Jerusalem artichoke bed. Tiny, green leaves sprouting all over the vegetable bed. It's been a little over a week since I was here and weeded out the same green leaves, but here they are back again. Diligent, gloved fingers gently digging into the ground, trying to pull them up by the root. To make room for Jerusalem artichoke to grow big and strong. It's kind of the same with mental energy. If you let the mental weed grow, there will be less energy left for the rest. So often it's spent on trifles and nonsense. Like this week for example where I have spent an awful lot of time being annoyed by a letter that arrived in the mail. In the bigger picture, it is not the end of the world that the board has decided to remove my newly built flowerbed. But it irritates me a great deal. Being annoyed isn't always pointless. It made me sit down and write a proposal to the general meeting, but when it was done I should have just let it go. Instead, I have gnawed at it every time I see this letter. So for now, I have to deal with the same way as the the small green leaves, weed it away by hiding the letter in the drawer. Some weeds require a little more work, like dandelions. It's not enough to poke around in the ground. The root is deep, and usually you don't get the whole thing out. No matter how deep you dig and how hard you haul, there is always a small piece of it left. A small piece that has suddenly grown big and pops up again at the wrong time and place. Like the fear of not being able to be a mom. That's a dandelion I have been working on a lot, and I'm finally getting to the end of the root. All the world's pondering, anger, tears and wishful thinking will ultimately not affect the outcome. And that's often the case with some of the things that are allowed to take up mental space. Some people manage to see dandelion as more than just weeds, as something edible. Apparently it tastes good too. Maybe you have to do the same with the mental dandelion as well, make the worst case scenario as edible as possible ..  It's 30 minutes before my phone consultation with the rheumatologist. Last check-up, my test results were so good that I don't need a physical appointment. While I wait for the clock to strike 10:00, I google what the most common finding in kidney biopsies in lupus patients are. After reading the abstract from two studies I find (Wen, 2011 and Kar & Ganiger, 2019), I'm mentally prepared that the most common finding seems to be class 3 and class 4. Of which class 4 is supposed to be the worst. Still, I have an underlying feeling that I won't get any really bad news today either. I'm feeling great, and my test results were so good last time, it would be weird if this has suddenly changed dramatically. But I try to keep my optimism in check, before these chek-ups. «Drammen Hospital Rheumatalogist». The call lights up the phone screen. After a 20-minute conversation, I call my mom smiling. The doctor is very happy with the test results and the disease activity is now even lower than last time. Regarding the kidney biopsy, there were not enough glomeruli in the tissue sample, so they could not classify the nephritis. The glomeruli are tiny clusters of blood vessels of which there are about 1 million in each kidney (large medical encyclopedia). The clusters filter and purify the blood and this is where the infamous autoantibodies can decide to settle down and make havoc. They study these clusters under a microscope and look for changes. Although there were not enough of these to classify the nephritis, it was enough to confirm the lupus nephritis diagnosis. But, since I respond so well to the medication and the tests are back normal again, I don't have to worry about the kidneys, nor do I have to take a new biopsy. Protein is no longer leaking into the urine and it all looks very promising! In other words, there is every reason to smile! So I can consider myself healthy for now and we'll just have to see how it develops. The next check-up will be in Drammen in 3 months. The most important thing going forward is protecting myself from the sun and avoiding stress. "Poison stress is" - Yoda  Sources:
Kar, D. P. & Ganiger, V. C. (2019). Renal biopsy findings in lupus nephritis and their correlation with clinical and biochemical parameters. Kidney International reports. VOLUME 4, ISSUE 7, SUPPLEMENT, S317, JULY 01, 2019. https://www.kireports.org/article/S2468-0249(19)31017-4/fulltext Wen, Y. (2011). Renault biopsy findings in new-ondet systemic lupus erythematosus with clinical renal disease. In. Urol Nephrol, Sep; 43 (3): 801-6.doi: 10.1007 / s11255-011-9911-3. Epub 2011 Feb 20. https://pubmed.ncbi.nlm.nih.gov/21336956/ It's neither shower scenes nor movie psychos that makes me vary of the shower drain. It's the hair int it. Or rather, the amount of hair in the shower drain. Losing hair (Alopecia) was one of the early symptoms I got. Incredibly enough, it was also one of the early symptoms I did not notice. That is, I did notice a few times that it had to be emptied more frequently, but I thought it was because I have blond hair strands, and sometimes you shed a little extra. I even found a reasonable explanation for the thinning of hair at the front of my head. I blamed it on the hydrocortisone I used on the sunrash, that it burnt the hair away. (Yes, the sunrash also turned out to be a symptom ..) It is only now afterwards when my hair has started to grow back that I can see how much I actually lost. The reason for losing hair is because the immune system attacks the hair follicles and the hair falls out. Usually the hair loss is temporary and grows back, but sometimes scarring can cause the hair loss to become permanent. That's why I have become a little sensitive about the shower drain. So when I'm in the midst of shower this evening notice the water is flooding the bathroom floor, there's only one thing going through my mind; «Its back». The lupus must have woken up again and the rheumatologist will ramp up the dosages again this Friday! With my hair full of conditioner and my head in full crisis mode, I'm frantically splashing around trying to steer the water back towards the drain. Finally, I get control of the water masses and inspect the drain, looking for hair. On closer inspection, it turns out that this is more of a job for a plumber than a rheumatologist ..  "I'm still standing better than I ever did Looking like a true survivor, feeling like a little kid " - Elton John The words of Elton John's "I'm still standing" is flowing through my head. It's Sunday and I'm on the track circling the stadium. A blanket of wood anemones is covering the forest floor. My heart rate rises, and my thighs tighten as I push the pace. There's a healthy burn in my chest, and it feels great! The only thing running down my cheeks today are raindrops. Today I am happy and strong. Not because I have miraculously recovered, but because all the bad, sad and painful things have made me stronger, more robust! But this post is not for me. This post is for you. To whomever is in that same dark and painful place and are feeling really upset right now. Who feels that life has taken a turn for the worse and that the weight of the diagnosis is about to break you. It gets better! The dark moments will be fewer and further apart and you will come out stronger on the other side. I promise you, do not give up! If anyone can handle this, it's you!  Not sure where I found this meme |
AuthorA blog about beeing newly diagnosed with lupus. Dreaming of becoming a mum once the disease is under control. I am translating the blog to English so the posts will appear on this page as I go. Archives
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