I have to say that the final bit of this year, was not the happiest period. Mid-December I flew back to the Netherlands to spend the holidays with my family and get checked at the hospital again.
Charlie and I had been busy on the finca and we were struggling to connect with each other. He was challenged by some old patterns, which really also pushed my buttons. The idea of going to the Netherlands for the holidays felt like a good one. To have some time apart and some space to feel my feelings and not be so busy with the finca and all that needed to be done there. But, be careful what you wish for… I can say in hindsight.
Before flying back my LPG tank was running out of gas, so it was time to take Lotje for a spin. This sounds like something super simple, but on a finca with 10 meters height difference, after a rainy period, with a ‘road’ that has never been used and is covered with pieces of freshly shredded wood with a van like Lotje, that’s quite the adventure… With the super sticky mud, the profile of your tires gets filled up and you lose all grip. Just driving away from the homebase parking spot already took 5 attempts, before having enough grip to make it. Then it was a bumpy downhill track and exit covered in mud, because of the well that had been drilled. Yes, we have water on the finca!! So, the exit also took some extra speed and sliding, but then I was off! A bit hesitant at first, because I hadn’t driven much with my new clutch disk, but after a while, all felt really good again. Just after sunset, I came back. First, through the entrance mud, which took several tries. Then, getting enough speed in 1st gear to make it up to homebase parking, which I managed with some sliding and proper bumps, and then parking was easy. The next day I discovered that the wires that indicate the water tank level had been ripped loose, probably by the pieces of wood on the road. All in all, that was quite exciting!
On the day of my flight, Charlie and I had a really nice and connecting conversation in the morning. Sharing all that we appreciate in each other and the gratefulness for being together, which was beautiful and heart-warming. Charlie was going to take me to the train station and would continue to his training weekend in Jerez. Because we normally go to the train station in San Fernando, we just headed in that direction. After about 10 minutes on the road, I realized that I had booked a train from Jerez, because that made so much more sense. The only problem is, is that Jerez is a 30 minutes’ drive further and would be impossible to reach in time. There was a train going 45 minutes later, but the lady from Renfe, the Spanish train company, told us that that one was already fully booked. And with later trains I wouldn’t be able to catch my flight. While driving I found that there was also a bus going from Jerez to Sevilla, which we weren’t really able to catch, but with some extra gas and a late departure of the bus, I made it. Our goodbyes were hurried, which later felt really sad.
Once on the bus, I had 2 hours left to board my plane. I wasn’t sure how long the journey would take. I might still miss my flight. The bus was going to Sevilla centre. Turned out that was still a 45 min transferbus ride to the airport. Fortunately, we took the tollroads and with 45 min left I was in Sevilla. A hopped on the first taxi I saw. A man had just entered and I asked if we could share the ride. The driver and the man were fine with it. It turned out that the man needed to be in the centre, not the airport. With a slight detour I arrived at the airport at 10.55. I took the wrong security check line, where, as soon as I had put everything on the belt, they decided to do a switch of personal. At 11.05, after a quick pee and refill of my water, I just followed the last people to board the plane, that was set to leave at 11.15. Wow… not a good start, but I did make it J.
Back in the Netherlands it was the worst weather to arrive in, rainy, windy, cold, darkish, just general bleh. The first week I went back in to the lab for some work and I had to go to the hospital for my checks. During my second workday, a stomach flu I had caught, slowly started to make its appearance. It was a very similar experience to the one I had in summer. Total involuntary body cleansing that was done in 6 hours. The journey home, which at that moment was with a friend in Gouda, was one that took a bit longer, due to a lack of toilets in the train and me really needing one. So, with half an hour delay, because I was sitting outside, waiting for the next train to come, I walked home like a zombie and stayed in bed or the toilet for the rest of the evening. At 10 in the evening, after a nap, I woke up and the pain had passed. I still felt a bit weak the next day, but good enough for work and my doctor’s appointment in the afternoon. Blissfully unaware and confident, I went to see the doctor. He told me that the biopsy report had been expanded a bit since last time, when they only had had enough time to look at it, to confirm the diagnosis. He told me I really needed to start the medication he gave me last time, to lower my blood pressure (which was a bit higher than last time, so fairly normal) and to reduce the protein loss. They had found some inflammatory cells, which meant that he strongly advised me to get admitted to the hospital for 3 days, to get a prednisone treatment, to get rid of the inflammatory cells. These cells indicate a possibly more aggressive form with quicker decline in kidney function. That really felt like a slap in the face, since I had been feeling so strong and fit with all the work I had been doing on the finca. He told me to enjoy the holidays as much as possible and to come back the first week of January to start the treatment. It also meant that I would have to stay the in the Netherlands in January and come back often for checks in the following months. I would be put on lower dose prednisone pills after the treatment and with every check we could see if we could lower the dosage again. I felt devasted. This had been the first time that I had already booked my flight back and I saw the whole journey on the finca with Charlie and the kitties vanish before my eyes. I called Charlie in tears and told him what needed to happen. He didn’t like the idea and was wondering if there could be something else we could do, but also started to think about flying over to support me if I wanted that.
In the days that followed, life continued as it does. I went back to work, cancelled my flight back and told Aude I wouldn’t be able to cover her yoga classes in Spain, because I had no idea if and when I’d be back and how I would feel. Charlie reached out to his network, that connected him to a Spanish nephrologist, Maria, who is also a dietician and an acupuncturist. He got really excited after talking to her and gave me a list of diet advice he had gotten from her. Mainly fish, meat, fruit and most vegetables, no beans, nuts, seeds, dairy and gluten. He also arranged for us to have a whatsapp call together with the three of us after Christmas. He is a strong advocate for doing it differently, which has been very helpful in keeping me awake, but also very challenging, because my trust in the medical world is a bit bigger. In the meantime, I looked up information on diets and auto immune conditions and the doubt about whether I wanted to get the treatment started to grow, since there were quite some promising stories. I spend a lovely Christmas with my family. Sharing, playing games and eating, while implementing the diet as much as I could. It’s interesting to see how I could start this strict diet even though it was holiday time. Not easy, but my determination (or should I say fear?) is incredibly strong. I talked to friends and family, in the hope to find an answer, but I didn’t really. My parents were really supportive of the diet choice and putting the prednisone on hold. We’ve been ‘busy’ with this condition since I was a kid, although we never knew what it was. So my dad, like me, was also struggling to believe that it would be aggressive now. My dad told me about the decisions and second opinions he, my grandpa and mum had to take when they were sick. Some which worked out well, some not so much. Although we’ll never know how it would’ve gone if they had chosen differently. In the end I have to make the decision and take the risk. I had never realised how hard it is to go against medical advice, with my science trusting mind that also wants to believe in the healing capacity of her own body. This also reconnect me with the feelings of anxiety of not trusting my body, that I’ve struggled with for so many years.
After Christmas I had the call with Maria. I had sent her my medical information from the past half year, including the biopsy report. She was really calm, took loads of time explaining everything and answering all our questions. She shared her view of giving the strict diet a chance, taking the blood pressure pills, and increasing the fish oil dosage. I could always take the prednisone at a later stage, but she felt it was too aggressive based on the biopsy results and bloodwork. My Dutch doctor had also told me I could take fish oil, although he didn’t believe in it, because science hadn’t proven it. He never gave me a dosage indication, so I had bought a bottle with about 10% of the recommended dosage. After the call, I felt more at ease and it slowly started to sink in that I did want to give this diet a go. Also, because I had caught a throat infection, which normally leads to blood in my urine, but now, with my new medication, it didn’t happen. So, something good was changing.
For new year’s, I went to my aunt for a couple of days. She joined me on my diet and we started to get creative with food. We made some delicious meals, which made my confidence grow. This new way of eating, which is very low on calories, unwillingly made me lose some weight. It’s not easy for me to gain weight and I already eat quite a lot. I had arranged a call with my Dutch doctor to tell him I wanted to try the diet. He wasn’t surprised and could support my wish, although he emphasized that he still recommended the treatment. He did feel there was enough time to try the diet and that in 3-4 months’ time we’ll know more.
The last days in the Netherlands, instead of in the hospital, I spent with my parents. Taking it slow, recovering from my very stubborn throat pain with ginger curcuma tea. I was able to work on my nearly finished new website with Christian, my website man, and arrange everything with my health insurance, reminding myself that I could have been in the hospital, but wasn’t.
It’s turning into a standard sentence in my stories, but it’s been another emotional rollercoaster. Time to go back home, to the sun and to see the kitties again (whom have probably grown way too much).