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.
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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 strange how quickly you adjust and get used to things. What felt like an unmanageable bomb a couple of months ago is now an unproblematic thought. The autoantibodies that felt like a death sentence on the dream of becoming a mother, no longer worries me the same way. It's the new normal that I will be a highrisk patient when I get pregnant, and I have come to terms with that. My gaze is wandering through the waiting room at the maternity ward in Rikshospitalet. I'm waiting to be called in for a preconceptional conversation. I am thrilled to be sitting here. 3 months ago I was told that my application would probably be rejected. Part of me is a little nervous that something new has emerged, but I don't think I'll be getting bad news today.
The nervousness evaporates as I'm called and step into the office of a cheerful and friendly woman. It feels like the whole room is filled with optimism and even though it's a serious conversation and a serious topic, I'm filled with the same optimism. There are several potential complications associated with pregnancy and SLE. It is very important that the disease is under control and that the disease activity has been low for at least 6 months before I get pregnant. Since I am Ro-positive (SSA autoantibody) there is around 2% chance of heart blockage in the fetus. As a result they will be listening at the baby's heartbeat every week from week 16. In addition, I will be put on blood thinners from week 12 to reduce the risk of preeclampsia (pregnancy poisoning). I will continue on the medication I am currently taking during pregnancy, as pregnancy may increase the risk of flare-ups. I am informed that the disease carries a higher risk of growth retardation and premature birth. The list of high risk and potential complications feels long. But the doctor emphazies that now I'm beeing told everything that might happen, usually it doesn't happen. With close monitoring, the vast majority of these pregnancies is sucessful. And this one will be to! When I leave the office, a huge weight has been lifted off my shoulders. As I'm walking towards Rikshospitalet from the parking lot, I'm trembling with expectation. I am excited and nervous because today I have time appointment where it will be assesed whether I'm a suitable candidate for IVF treatment, as a single woman. What questions will be asked? What will they say? Will I be defined as unsuitable? That will be the worst possible outcome, that I will be deemed not suitable to become a mother because I'm sick.
Before I went to Denmark, I went through a number of thoughts and considerations about becoming a mother on my own. In some ways I have probably thought this through more than most people, who do it the "regular way". Since I got sick, many of the same thoughts have popped up again, with the disease in mind. Being alone will make this child more vulnerable if something happens to me. But the prognosis for Lupus indicates that I will most likely live a long and fairly normal life. And life can happen to anyone. Even the healthiest and fittest can end up in accidents and vanish. Should the fact that something terrible might happen stop us from having children? With this train of thought running in my head I'm called into the doctor's office. The feeling of going for an audition disappears as soon as I enter the office. There is a friendly and humane tone in her voice and the way she asks the questions makes me relax. She asks thorough questions about my diagnosis and treament. After an ultrasound examination the appointment is coming to an end, and the conclusion is; I'm a suitable candidate for IVF and will get an attempt. The waiting list for a spermdonor is long, and the waiting time is about 12 months, but at least I am on the list! Fate would have it that the day before I got the lupus call, I went to the gynecologist to apply for fertiliy treatment in Norway. With my 38th birthday fast approaching and 3 failed insemination attempts, it was time to consider IVF treatment.
In the wake of the diagnosis, I have almost forgotten about this application, until today. I received a letter from Rikshospitalet's Fertility Clinic. Rejection of referral. "I am sorry that we are unable to consider your application due to lack of information." The letter leaves me fuming. "MISSING INFORMATION?" I immediately fire off a question to the gyno's office regarding the missing information. Shortly after there's an incoming call. I am suddenly overcome by a vicious anger. All the frustration and disappointments I have felt lately are about to be channeled into this particular phone call. I'm ready to rip his head off and give him a verbal abuse he will never forget. Fortunately, as I answer the phone, I manage to take a few deep breaths and calm my wild rage down to a mild irritation. It turns out that there has been a misunderstanding with the missing information and test results but this will be fixed. Due to the newly diagnosed lupus it will be better to update and resubmit the application. There's a sense of relief when I hang up, unfortunately this will not last for long. A few hours later I get a call back from the gynecologist. He has had a conversation with the fertility clinic and is calling back to inform me that it is unlikely that my application will be approved, due to the newness of the disease and my age. However, I am free to apply if I wish. I manage to confirm that I still wish to apply. At this point it feels like there's an endless parade of bad news waiting in the wing. I have a fair idea of what 2021 will look like .. Theres some unread snaps in a Snapchat group. A friend's pregnant belly pops up and the comment makes me giggle. A friend responds with a picture, she is on her way to ultrasound. Is she pregnant too? She confirms when I ask. In our little group of 3, 2 are now pregnant. If my the next attempt in Denmark had been successful, we would all have been pregnant together .. I´m left with a strangely ambivalent feeling. On the one hand I am superhappy for my friend's great news, on the other hand a wave of envy washes over me. It feels so unfair that my own dream is put on hold. "Well, with the prednisolone I´m getting these days, we'll probably all look pregnant soon." I do not press send on that last comment. I don´t want to put a bittersweet filter on the good news. Right now, my life feels like scenes from a movie, and at the moment it's hard to see if it's a movie with a sad or a happy ending. Foto: Guttorm Wiik
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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
November 2021
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