Dealing with my auto immune condition during Corona times

Wow I made it! Four months of very strict diet to allow my immune system to calm down and my kidneys to stabilise. At least, that was the intention.

Very vividly I remember, when I visited my nephrologist just before Christmas, this chilled out feeling that everything would be fine. I had been feeling strong and healthy and had been living healthily for quite some time, so I should be fine right? But he brought the news of values being too off and more results from the biopsy that showed that there was a chance that progression towards kidney failure could be fast. He recommended prednisone treatment in the hospital, first thing after new years. This would suppress my immune system badly enough that it would not be damaging my kidneys anymore. I felt so devastated and such a resistance.

Creative with bottles for the construction of our baño.

And then the contact with the nephrologist in Spain, who has a more holistic and integrative approach. She recommended the diet, besides the blood pressure lowering medication that my Dutch nephrologist had also prescribed.

It has and it hasn’t been easy, to follow the diet. On one hand it felt like a no-brainer and the excuse I’d been waiting for to quit the less healthy foods I was still eating sometimes. The food I’ve been eating is really tasty and a joy to eat. In that sense it’s not hard at all. On the other hand, my choice of foods was very limited (mainly veggies, fruit, fish and meat (chicken)), making it difficult for me to get enough calories. There was no easy snack, especially not while travelling, I would always have to prepare something. It was a constant reminder that even though I felt good, there is something wrong. Losing weight scared me and reminded me of the anxiety attacks I had had in the past and the fear I’d always felt and how those two together can turn into a vicious circle. There was also the fear of doing it wrong and not being strict enough and the potential consequence of that for the function of my kidneys. My inner critic was a very busy chap, pointing everything out and emphasizing the drama. I felt like a massive burden if I went to eat with family or friends, because they had adjust so much (no sorry, pepper and tomatoes are on the no-list and easy on the salt please!). And if there was a gathering where everyone had prepared something I almost always had to say no and eat the food I had brought myself. I started to feel hesitant of joining shared meals and much more preferred to eat with Charlie or by myself, to just not feel so confronted. The nice social gathering turned into a frustrated feeling of there being something wrong with me. Not being able to enjoy what everyone was sharing (the homemade tiramisu that was once on the table was really not cool). Feeling different wasn’t a nice experience at all. It felt rather lonely and sad.

The idea was to get my blood and urine tested mid-March. About 2.5 months would then have passed after the last test and since the beginning of my diet and medication. Testing sooner wouldn’t make sense, since it all needs time to find a balance.
Then Covid happened.

Helping with the plastering of the baño. So much fun to learn these new things!

My feelings about getting tested were really mixed. On one hand I didn’t want to go to the health centre during this situation. For the reason of other sick people being there and me being a person at higher risk (another thing that feels really untrue) and to not bother the healthcare system with a test that doesn’t appear to be super urgent. On the other hand, I had no idea if I was an urgent case or not. If everything I was doing wasn’t helping and my kidney function was dropping, I wouldn’t feel it until it would be too late. That’s the whole problem with kidney problems. Our magnificent bodies can compensate so well, that a lot of people don’t have symptoms until there is about 20% kidney function left, which is the time to get dialysis going. The symptoms are those of the body being stuck with too much waste and I would prefer to not enter that stage yet. Part of me was also in the ignorance is bliss mode. As long as I didn’t get tested I wouldn’t be going to any hospital. Many people had been telling me to listen to my body and just trust that it would all be fine. But it doesn’t always work that way.

Early April I had found the courage to start arranging the visit. This sounds a lot easier than it was, with all the covid measures. We went by the centro de salud, and were told to make an appointment online with an app and sent away. Unfortunately, the app needs your Spanish health care number which I don’t have. After a call and explaining that I’m a foreigner with European health insurance, they told us we could come by. The next day, I felt quite nervous as we went there. Everything now got really real again, even though I knew I wasn’t going to get any results that day. I had stepped out of my ignorance is bliss bubble. They registered me and told me to wait. After a while a doctor from the emergency picked me up and I explained my situation. He told me he couldn’t help me and that I needed to talk to a GP, since this was a pre-existing condition. He also couldn’t renew my prescription, which I needed since I wasn’t going to be in the Netherlands by the end of the month to get them there, before running out. Back at the front desk they reluctantly made an appointment for the GP and the waiting game continued. I think in the end we were there for about 3-4 hours. We left with a new appointment for the tests for the next day, a new prescription and me needing to pee really really badly. I hadn’t been sure whether they would be able to do the tests that day, and it’s really annoying to not be able to pee in a jar when they want you to and to have to come back for that.

Life continued to grow on the finca, spring is full-on 🙂

The blood and urine tests the next day, fortunately went superquick. A week later I could call to make an appointment to get the results.
After the tests were done, I already relaxed my diet a bit. It would’ve either worked and I could introduce things again, or it wouldn’t have worked and then it wouldn’t matter anyway. In the week between the tests and getting the results I tried to think about it as little as possible. There was nothing I could do or change anyway and I still felt good. There were some meditation sessions where I experienced strong fears and doom scenarios of being alone in a Spanish hospital, or having to go back to the Netherlands and being stuck there for months. But as with everything, those passed.

Then the day came with the results. The GP in the health centre did not have access to my file so she couldn’t say much about the results. She said the same as my GP in the Netherlands last summer: “for your age and posture the values are a bit off, but it doesn’t look worrisome”. She told me to get in touch with my nephrologist, Maria, who lives in Malaga, and then they would call Charlie (I don’t have a Spanish number and they don’t do foreign numbers) to check whether they needed to take action here.

She gave me the papers with my values and my worrying intensified. As soon as I came home I looked up my old values and started comparing. I also sent Maria a message with my results and the wish for an appointment. Unfortunately, they don’t do the exact same tests in Spain and they write it down in a different concentration value, making it more complicated to compare. The manner of calculating kidney function is also very different form the one used in the Netherlands, and even with a bit of google help I couldn’t get to the number they had found or the number of my old measurement back in December. The only thing I saw was that it looked worse, which really upset me. Fear took over and a sense of disappointment with myself for trying so hard and still failing just kept taking over. It was a very long and emotional 32 hours, until we had the video call with Maria.

Easter egg painting, because I can!

As before, she took loads of time to ask me how I was feeling, what I was eating and answering all the questions we had. She explained my values and how they were calculated and that most of it was looking really good. Instead of losing 1.5 grams of protein I was now on 0.5 gram (in healthy people it should be 0 but for me and my kidneys this is huge). This was also the value my Dutch nephrologist had been talking about before Christmas. My potassium was a bit high, probably due to the dried fruits that have become my candy snack and are generally high in potassium. But that should be adjustable with the diet.
She was happy to tell me I could eat seeds, beans and spices again, gluten-free grains and legumes, and a bit of yoghurt and cheese (preferably goat) would be ok again too. Honestly, the joy of eating this… 🙂 It will also make it easier for me to gain a bit of weight, or at least not lose any more. With the work on the finca, I’ve been quite active physically. Adding some carbs to my diet will help me and my body out with having enough energy.

You have no idea how happy I was with the conversation with Maria. Also her availability and how approachable she is. I feel that that already helps me so much in this process. Feeling heard, being able to send an app or mail if I have a question and the time she makes. It’s such a different experience than the ones I’ve had with my Dutch doctor. I guess that’s also the difference between ‘normal’ and private doctors.

Eki, chilling out the van window, enjoying life <3

Through the whole Corona situation, I felt so relieved to be on this healthy diet, however hard sometimes. Also happy to not be with a poorly functioning immune system, because of prednisone. Relieved to be in Spain and not be in the middle of my treatment, for which I would probably have had to stay in the Netherlands with my parents or alone, since it would have been about a 6 months treatment plan. For the first time though, I did really miss my family and friends a lot. Especially since my trip to the Netherlands has been cancelled and I don’t know when I will be able to see everyone again. Getting to the Netherlands shouldn’t be a problem, just getting back to Spain again would be. Even though I miss them, having to stay in there for months doesn’t feel right either.
Here in Spain I’m living outdoors, on a spacious finca, being busy outside every day, with nice temperatures, both sunny and rainy. Reconnecting with Charlie and feeling grateful for being able to share our newly shaped friendship. Grateful for how I feel, my discipline, my resilience, all the personal practices that have helped me feel as sane as possible during the past year. The choices I’ve made to get to where I am now and all the support I’ve received while making them, from the beautiful souls in my life.

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