NEW BLOG POST:
The last TROM Meeting. Maybe?
Read it on my website (recommended):
https://www.tiotrom.com/2023/06/the-last-trom-meeting-maybe/
Or read it here:
The first TROM Meeting was in 2019, in May. Some 12 people came. We rented something for 3 weeks here where I live. It was very exciting at first, to see everyone for the first time:
But then I started to realize how tiring it is to have so many people around at once. So I was struggling a bit. However the worst was when I started to pee blood, mid way the meeting, and I thought am gonna die :D. It was a hellish experience for me. Read this blog post to know more about.
However looking back it was a very nice time, those first days, maybe the first 2 weeks, when I was not as sick. Memories, you know. I’ll try to keep the best and discard the worse.
Since then a bunch of things have changed. My health greatly improved, some people lost interest in TROM, new people gained interest. I created trom.tf and a bunch more stuff, plus managed to finish the TROM II documentary that should be released this month. So we decided to make another TROM Meeting, 4 years after the first one. EXCITED!
All healthy, the documentary (huge project) done and shared with the ones coming at the meeting, new excitement felt in the air. We rented a place near where we live in Spain, and invited some 14 people. Only around 10 or so could come, but then things got more complicated because now most people had jobs (unlike the first time we met) and had a hard time taking some time off for the meeting. I struggled to organize it, but we finally decided to meet for 8-10 days. Based on the first meeting, 3 weeks was way too long.
Unfortunately, again, a few could not come for health reasons or unable to get time off from their jobs, and others came later. But we were all set. I organized everything. Sasha and Georgi helped me prepare it all :). Was so excited about it. I needed a break! I wanted to laugh, to dance, to hike, to spend time with some wonderful beings. I worked too much on the documentary for the past 2-3 years. So I needed a break. It was a great timing since Sasha also finished her book and she also felt similarly.
All set. GO!
I went to the house with Sasha to organize things:
She was not feeling that well. Some abdominal discomfort on and off for the past weeks. But nothing too serious. We continued.
Vicky and Rafa came first, with their car. Drove for 6 hours. They are such positive creatures you will smile 90% of the time when you are with them. So kind, so organized, so friendly. Roma came the next day after the train he supposed to take here, was canceled numerous times. Roma is my brother for sure 🙂 – friendly, organized, in a good mood, helpful, so kind. We were all getting used to being with each other, but a bit tired. They were tired because they had to travel for so long, we were tired because we had to radically change our sleeping schedule to wake up earlier.
Then Alexio came. He was the only one we did not meet in person. He was so tall, and his kindness on par with that 🙂
So positive, always smiling, always friendly.
Me, Sasha, Georgi, Vicky, Rafa, Roma and Alexio. That was the team. Unfortunately Guil had a bad accident a few days before the meeting so he could not come 🙁 – he would need a few months to recover. Aaron was also unable to take any days off from his job…
We were all quite sad that that they could not come.
Ok. Let’s have some fun.
We went to some parks nearby:
To show off our athletic skills 🙂
And coolness 🙂
We then visited the seaside:
And found some alien creatures:
The next day we decided to go to a nearby park in the forest and we spent some really fun time there.
Laying down in the hammocks in the shade:
We played “mime”, a game where someone gives you 2 words, like say “inhabitable exoplanet”, and you have to mime that without making any sounds, and the rest have to guess it. I love this game because everyone is engaged. We laughed, it was fun.
I had to mime: endless time. Go figure….how do you do that? But I managed it eventually haha.
I’ll let you guess what Sasha might be miming here haha. Or Georgi.
Or Rafa being an octopus stripper:
We had such a great time there. Was not too hot, it was calm, it was fun. I felt like a kid again 🙂
Going there, coming back, cooking food, staying in the house, were flavored with us talking about all sort of interesting things, from TROM to the universe, from computers to us.
Later that day we had a barbecue. And I always end up in charge of that and smelling like a burned piece of wood at the end.
At night we could see the Moon and Venus from the backyard:
Unfortunately I had no time to get the telescope from home to watch some of this stuff….You see, the food aspect of life takes so much time. Especially when you are 7 or so people, and some like me having to cook separately because of stomach issues. It is so time consuming and exhausting to buy food, deposit it, cook, eat, clean….I started to get a bit tired. Sasha kept on having those health issues and would wake up in the middle of the night because of that. I tried to keep myself engaged and positive because I had many reasons to. But it was tiring….and a bit stressful because of Sasha’s issues.
You see when these wonderful people come for these meetings they are so eager to talk. And talk. And talk about many many interesting things. And that can become very tiring. Especially for me since I just finished a 2-3 years work for the documentary and I wanted to mostly chill and relax. But I cannot ignore interesting people and discussions. I can’t :D.
Ok.
Next. We visited a medieval town nearby. Was quite nice.
And at home we reinstalled TROMjaro on Rafa’s MiniPC:
But Sasha’s issues did not go away. She had them every morning. Not too painful really, just a weird discomfort in the lower part of the abdomen, as if you have an UTI. We went to the doctor and no UTI. Strange. She was sent for more tests. You see Sasha’s stomach, the digestive machine, is amazing 🙂 – she can eat anything and pretty much never has any stomach issues. But now suddenly she started to have these uncomfortable stomach issues that were on a daily basis and lasted on and off for more than a month by this time. And for the past days it was a daily occurrence.
I was like….wtf….the first TROM Meeting was ruined by my weird health issues and now Sasha has these weird health problems. This is too much….
Of course, the important bit was for her to be healthy, the meeting was secondary. But I was thinking how unlucky we are… Her health issues made us kinda stressed, tired, and cut the fun in half. At least for me for sure.
But anyway, we tried to still keep ourselves happy.
The Song.
A year or so ago we (I, Georgi and Sasha) made a song. Original lyrics and all that. So we printed it for everyone and sang it together. These are the lyrics:
And here’s a bad recording of us trying it out 🙂 – bad in terms of video quality 🙂
Everyone really liked the song. Actually we had a guitar and an ukulele and we jammed a bunch of times together. I know how to play them but only a little bit :), Sasha and Rafa know a lot more. Roma knows some too :). So it was fun to play some songs together.
Two more people came the following days: Matthias and Ann.
I met Matthias when he came a year or two ago to our place for a barbecue with Dima. He was volunteering with the same organization as Dima and came back with him to stay at his place for a day or so. I really liked the guy. He seemed very interested in TROM. He said he will visit us but we had to kindly refuse any visit for the past year or so in order to finish our documentary and the book. So I told him that he can come for the meeting. He is so kind, interested and interesting. Same is Ann. Very nice and calm people. Chill as fuck :).
We were more now, but Matthias and Ann had a van and a tent and they were staying near by in that nice forest where we put the hammocks. So the house was still not that crowded.
The next days we went to visit a very nice botanical garden. Another reason to talk more about interesting things.
Vicky is studying the plants for some courses she takes and she knew a lot about plants and insects. Her English improved since the last meeting, by a lot, and she is so funny. She uses the word “fuck” many times, and that’s so hilarious when combined with her Spanish accent.
By the way, I really like the girl from this above photo. Just saying.
We spent several hours in that garden and took a million photos. Right Alexio!? 🙂
We then visited a castle that’s on a very high hill where you can see all of the surrounding areas.
I was getting more and more tired. And a bit stressed because of Sasha’s issues. But the “party” continued. One night we made some TROM tshirts like we did the last time. Basically all you need is some tshirts (old or buy new ones) and some normal paint.
And then you can put your handprint on them. That easy!
Unfortunately it was late at night and Matthias and Ann were “long gone” to their cozy forest, so we did not make any for them 🙁 .
We wanted to do one more trip before the meeting was over. To a place where we always find friendly octopuses. And so we went:
It is such a beautiful place. Sasha found a grumpy old octopus a bit far, so only Rafa, Matthias and Ann adventured to see it.
You may wonder….this all sounds like a fun nice vacation. What’s so TROM about it?
You see, the work I/we do for TROM is happening behind the screens. I work like a maniac almost every single day. Alexio is always on the chats helping out, Roma helped the project financially so many times it is insane, plus he helps with TROMjaro and such; And so are the rest helping whenever they can. The meeting is supposed to be for creating some bonds, some relationships; to talk, to enjoy, to get to know each other better. You can’t realistically do more than that. I know a bunch of projects that have these “brainstorm” gatherings and in reality they do not do anything more than that.
For TROM is the opposite. The work is done in silence, individually, by each of us. And when we meet is for the connections between us.
Sasha worked quite a bit on the transcription in that meantime is true, I tried too. But it is difficult to focus much on these things. Too many people around, doing many things.
She also cooked for everyone a bunch of times, for hours. Even thought Alexio how to cook 🙂
I think that’s by FAR the best outcome from these meetings. To know each other, get comfortable with each other, and create new relationships. After all that’s how I and Sasha ended up together. That’s how I and Aaron became best friends and how I see this happening with Roma and Alexio and me. That’s how we got to know Vicky and not only Rafa, and get so close to them. That’s how we now got to know Matthias and Ann and who knows maybe we will meet again with them, maybe they’ll get involved with the TROM project in the future….
One comment I’ve seen from Matthias and Ann was that they were expecting more talks about TROM, maybe even to watch the documentary together and such, however for one I was exhausted, and second I did not want to shove down people’s throat this project. We have so many materials online so I thought to not make it look like a “cult meeting” :). In any case, this meeting was (from the get-go) one about friends more than one about TROM.
Dima and Mara came basically after the meeting was officially over, when Vicky and Rafa were already gone. Unfortunately we were all too tired by that time.
I kept in touch with Dima over Signal for these past 2 years so it was nice to see him again. The last 2 days were basically all about Alexio kicking everyone’s butt at chess 🙂 – apparently he is a grand-master at chess.
He was so good no one stood a single chance. And yet so funny and kind. You can’t get angry at having your ass kicked by him :).
Final days.
It was getting very hot, Sasha’s problems were still problems, we were getting only a few hours of sleep, and it was becoming more and more of a struggle for us. Oh, did I mention that all of this time Sasha was forced to deal with a lot of papers? The residency, the work, the this, the that….It was insane and endless. We still did not solve the paper situation….
We needed a break.
Everyone left except Roma who stayed 3 more days to our place and we had a more chill time together.
Such a wonderful kind! Despite us being tired and all that, this guy did not bother us at all. He manages his own shit and is so friendly you can’t be bothered by him.
I wish Roko or Shas could have come too, but they live far far away and on this paper planet you need a ton of papers to go from one place to another.
The meeting was better than I expected now that I look at it in perspective. Was quite comfortable and despite tiring it was super fun many times.
Why no more TROM Meetings?
When we rented a new place I did NOT want to rent the same house because that house looks haunted to me :D. It was the place where I had to stay while having so many health issues. It felt like an awful place towards the end of that meeting. For this new meeting me and Sasha stayed in a weird room, tho comfy still. The room was partly a bathroom.
Had a sink and a shower inside. The toilette was in a separate room. I mean is cozy to have your own shower and sink in the room, but because of Sasha’s health issues and waking up in the middle of the night and all that, I started to feel like being in a hospital for the last days. And that felt very strange. I mean it kinda looks like a hospital room.
So I honestly am sick of being sick when we do these sort of meetings. It is too much planning involved, too much responsibility for me to organize stuff for everyone, and so on. So I do not want to do this anymore. I want to relax more. If we meet we should do it somewhere else and I should not have to organize it, but all of us to.
The TROM Meeting is also more of a personal meeting so it may make no sense to call it that way.
Therefore I think this could have been the last “TROM Meeting” but for sure not the last meeting that we will have. Maybe even this year at the end of it we may meet again, at least some of us.
Sasha feels a bit better now, but we are still investigating. So far it does not seem to be anything that serious.
Conclusion.
Despite that interpretation of the bathroom/bedroom, the house was very nice:
With a cozy living-room and a fireplace:
A nice backyard:
And a nice terrace:
And despite the tiredness, everything was wonderful and I absolutely appreciate these awesome human beings:
And I hope to see each other more often, and dance, and play the guitar and ukulele, and make a new song, and go in nature, and have fun, and talk about interesting things, and live. Because life is like a domino game that has already started for all of us. And at times it is tricky and complex, at times it is smooth, but the fact is, that IT IS. And we should enjoy it while it is. The fun part of a domino game is while it is “rolling”, not when it ends.
So let’s enjoy the ride folks, as long as the ride is riding!
I appreciate you all very much, and if there is one victory I can claim in my personal life so far, it cannot be the change of this trade system that I talk about, it cannot be the popularity of the content I’ve created over the years, and it cannot be any big success with TROM. But I can claim victory when it comes to the relationships and the humans I’ve met. They are real, and they are enough for me.
Thank you!
NEW BLOG POST:The best/worst time of my life.
Read it on my website (recommended):
https://www.tiotrom.com/2019/09/the-best-worst-time-of-my-life/
Or read it here:
I feel a bit sick and I am peeing blood. Quite a lot of it. I also canceled TROM-Cast for today. So I thought let’s make this blog post and update you all about me. My life. And I.
Trying to compress half a year (or more) into a few words. Hard. But let’s do it. I tried to do this before, several times, but I didn’t have the time. Go.
So, a year ago Aaron who translates everything from TROM into german, came to visit me in Spain for 3 days. My first “meet-up” with a TROM human. It was great. We planned to make a bigger meeting in Spain so I decided around november last year to invite some 12 or so people who were close to the project, to come here in May. They got super excited and we rented a house for May 2019. A few could not come unfortunately. But the present heroes are: Dima, Mara, Sasha, Yoav, Aaron, Seb, Sofie, Rafa, Vicky, Cody.
This is me (haha) in my tiny room in Spain, back in 2011. Right after I got my first donation: 1.000 dollars in total, to buy a new computer and redo TROM.
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NextI had to improvise and adapt to that little room. I had no chair and that thing I was staying on was very uncomfortable. The monitor was very far away from my face, and my astigmatism doesn’t clear things up ;). But it was good. I worked many hours every single day. 8 months in total. That’s me basically for the past 10 years or more. Alone. Me and my computer.
This is another, even smaller room, where I made TROM from a bunk bed. On my back looking at the ceiling where my monitor was in a constant terror of falling down. Poor thing.
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NextThis is from my room in college (rented apartment – no furniture, we had to find some). Plus, no washing machine. Don’t get fooled by the monitor, it was the only good thing about my system and was cheap actually. I still have that monitor btw. Since 2009 or so.
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NextA big room it’s true. But fucked up chair, and computer, and everything else. Those football players on the wall are to cover the fucked up wall, and that bottle…is not ALCOHOL! 🙂 – it is water. I don’t drink alcohol. This is when I first conceived TROM, in that room.
I loved the computer world because it was a world that I could control and manipulate. I was a little god in a tiny universe. I realized that my god powers can extend if I switch from my romanian blog to making some videos into english. And so I made TROM.
Many years later, surviving through the calm world of being alone :), many times being told that I am too lonely, things changed 180 degrees. My loneliness allowed me to focus 100% on my godplan :). To me it was an advantage, though at times I felt a deep sadness inside. Don’t know why, maybe because this society is constantly reminding you that your life is not the “proper” life, and can get you at times. But from that perspective I was ok. Still stressed out because I was living among normal people who don’t care about this world at all: from atoms to money. For them this is “what it is”, and “that’s that”. For me, it is not. I am curious and furious. Curios about how the world works (whales and evolution, quarks and stars, and everything in between). And furious about this messed up trade-based society that fucks all of us up.
So we end up here:
People came in May.A bunch of them. I was very excited and a bit uncomfortable to be honest, since I am not used to be around people :D. The first 2 weeks or so we got to know each other better, had a ton of conversations, planned some stuff in regards to TROM and this trade-free idea, went to the beach, to the mountain, for long hikes, and so forth. ACTIVE. I struggled to make sense of it all. On one hand I absolutely loved it. I even jokingly said that if my life ends now, I am happy with how I lived it :D. Seeing these beautiful faces getting this idea of TROM that I thought I will forever incubate it alone (in my room), was the best thing/feeling in my life. To feel relaxed 100% around a bunch of people, for me, it means I’ve reached paradise haha. Because my entire life was everything but that. These people “got it”. They seemed curious and furious. Like me. On the other had I felt robbed of my time that I could have dedicated to work on my computer. I wasn’t god-in-the-computer, I was tio-in-a-group-of-people. I am used to my digital god powers and to be alone working on stuff, not with a bunch of people around. But if anything, it was the discomfort of moving from this to that. And nothing else. These people were fantastic.
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NextThen, after a few days of intense activity, I felt sick.Like stomach sick. Mind you, I am used to long hikes and little sleep. I am fine with doing physical effort despite living inside a computer. I live in a very small town and it is normal for me to go for like a 10km walk a few days a week. But this time I did a lot of effort. I thought the food I eat made me feel stomach sick and the effort. Woke up the next day, went to to bathroom (like every creature with a bladder does), and because guys have this front-row seat when it comes to the miracle of peeing, I got to notice how instead of the yellowish stream that I am used to see every morning, I saw a dark red stream. And that wasn’t the beginning of a rainbow! No. That was blood. And boy I can tell you this is not a pretty sight. I immediately felt even sicker because I understood something is wrong with me. But I tried to lie to myself that maybe food can change the color of the pee in this dark reddish color. So I brushed this aside for a few hours because I was too distracted by those beautiful faces.
I continued to feel this sick feeling in my lower abdomen, and the second time I went to pee I saw the same kind of stream. That’s it. Fuck it. I am bleeding form inside. Of course I could not know (even remotely) what it could be: the effort? my bladder? kidneys? All? I told the guys about it and I rushed to the emergency room. There I provided a urine sample and they confirmed that I have a lot of blood in my urine. They asked me several questions and sent me home (told me to go to my doctor the next day). From that moment on everything changed for me. I simply could not enjoy the TROM meeting anymore because I was too concerned about the reason why I was bleeding and why so much blood. For sure, 100% sure, something “bad” happened inside my body. What followed was days going to the ER and appointments to doctors, and a struggle to try and enjoy the rest of the time I had with these people. We made that trade-free video, filmed some interviews, watched some weird things on the night sky through the telescope (like planets and stuff 🙂 ), and still had some fun. But I could not really enjoy it. At that point all I wanted was to sit down, relax, and be alone maybe. I could not join the guys for several hikes, and I love to do hikes, and that’s because what I realized was that when I was doing any kind of moderate effort, like carrying some heavy bags, going up the stairs sometimes, and so forth, made me pee blood visibly and feel stomach sick. If I then relaxed, I could see no blood. Exercise = blood. Not doing much = no blood.
It was very weird because it was so obvious. Like if I would do something of moderate intensity NOW, I would pee blood in the next 20 minutes. If I stayed in bed the next hour, no blood. I explained these symptoms to all of the doctors I’ve been to, but neither them or online searches could find this symptom anywhere.
The test that scared me
The general practitioner (the family doctor) then recommended me a test to check if there are melanoma cells in the urine. In other words, to test for cancer.The problem is that if that test comes back positive and they find cancerous cells, then you are pretty fucked. Blood in urine can mean cancer of the urinary tract. If it is bladder then your chances of surviving are super low. Like you’ll have at best 2-3 years of life. Kidney cancer is less dangerous and more treatable, but still, this test only finds aggressive forms of cancer so a positive result is a very bad news. The test was at the end of our meeting in May and it made me less and less engaged mentally with this entire thing. How unfortunate. Most of my life I’ve been alone and now that I finally found a bunch of amazing friends, I got into this health mess, being tested for cancer. From “the best time of my life” to “the worst time of my life” in just a few weeks. After 20 something days of staying here, everyone left except Sasha. I’ve previously talked to Sasha about the possibility of us moving together here in Spain, to rent something to split the costs. Other TROM people wanted to do that too, but Sasha was the only one to stay. Aaron also decided to move with us, but he would come later on in July.
The next days were stressful and crowded.I lived with Sasha in my little room in my parents’ house, while we were also searching for an apartment to move in. We could not find anything. In the meantime I decided to not wait for the cancer results and just go ask to the hospital for them. If I didn’t I would have have to wait a few more days. I went inside with Sasha and Georgi (my sister). We asked. They said the results were negative. Fuck yeah! I felt so good. Damn! Now everything seemed easier. I am cancer free! Or am I?
After a week or so we found an apartmentthrough Georgi from the rental company she works for. This city is full of empty apartments but no one is interested to rent for long term, since it is not profitable. So thousands of apartments are not used most of the time. The apartment was great! 2 rooms, 1 for me and Sasha, 1 for Aaron. A nice livingroom. AC. Close to the beach. 150 Euros each for the rent (monthly).
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NextBut what about my health? Before continuing let me tell you that my parents, Georgi and Sasha helped me a ton this period of time. They came with me to the hospital, helped with whatever they could, and also kept me busy so to not stress too much about it all. Kudos to them!
Back to my health. It’s been a few weeks since it started. We investigated infections and trauma, cancer and other things. I started to pee less and less blood. Even when I was doing some effort, I didn’t pee blood anymore. I went to the doctor to continue the investigation. Before the cancer test and other tests (including abdominal ultrasounds), the doctor seemed pretty sure we will know what’s the cause, but the opposite became true. We had no idea. He said they didn’t find any cancerous cells but they found some “abnormal” cells in my urine, and that from here on he doesn’t know what to do so he sent me to an urologist. In a month time. I said ok. I started to feel better and no trace of blood in urine. The mega-TROM-trio was now living under the same roofs. The goofs.
My health investigation continues and becomes even more mysterious.
I went to the urologist. He asked a lot of questions. Told me that they found blood in all urine samples, so regardless if I see it or not, I am still bleeding. They also found proteins in the urine. That is a sign of a leakage from the kidneys. He sent me to 3 more tests. First is to repeat the abdominal ultrasound, second is to repeat the “cancer” one. Fuck! But, the more I’ve read about that test the more I realized is not 100% about cancer, is mostly about the analysis of the cells in the blood: cytology. So, not specific to cancer. For the first cytology test I had to provide an urine sample at the doctor’s office, that he put in 3 jars. Now I had to provide for 3 consecutive days. This one seemed to be more accurate which made me think that maybe they will find some cancers cells now, that they didn’t in the previous one. So it became stressful again.
The third test. A beauty! 🙂
The third test consists of a camera that they insert through the penis and into the bladder. Yeah. I immediately said no. I don’t want that. I’m not homo. And I left the doctor’s office. :)) No, of course I was ok with anything if we are trying to figure out my health problems. This test is kinda a definitive test to check for any problems from the tip of the penis to the bladder. If you have cancer, or a tumor, or lesions. That’s the test for you.
The ultrasound was fine. The cytology one I still don’t know the results…the camera one…all was clean and fine, which was the most welcomed news.First, let me tell you about how it went. Basically you go there, get Adam with them, then they use a syringe without a metal head to inject some anesthetic through the penis. That burns, ok?! Quite a lot. Very uncomfortable. In the next minutes the doctor comes with a long tube, quite thick if you ask me, and without asking what’s your favorite color, what movies you watch or what college you’ve been at, he inserts that mother-fucker-camera through the penis. We didn’t even get to know each other man. What’s wrong with you!? So now, they push it deeper inside you. It is like you get fucked in the penis, if you can imagine that. 😀 The worst part is when it goes by the prostate cause that’s a narrow space and I almost dropped a tear there. Once it is inside the bladder you simply feel a pressure but not pain, and you can watch on the monitor your insides. It takes a few minutes and then is over and your dignity remains in that office.
But I was super happy because, before this test, I knew that if I had cancer of the bladder then with this test we’ll find out for sure. So the great news was that I was clean. Very. Spotless.
Since around mid July to now (2 or so months) I didn’t experience any problems.I ran, hiked, walked, did all kinds of physical efforts and everything was fine. I became so relaxed after the camera test that I didn’t care much. I also had no dignity so that helped :). The “best time of my life” was for a reboot. Season 2. Some characters are back! New are coming. Some left the show. Sasha had to migrate to UK as a fugitive 😀 because her visa expired but she’ll get back in October for good. Seb and Sofie moved here! Wow. So cool. We made 2 desks for them. They live 10 minutes away from us. Extra-Spanish and chévere people Rafa and Vicky visited us, then the great Roma, then some other non-TROM friends. What is this!? Why are so many people coming over? 😀
In this Season 2 I also went to a kidney specialist. Talked a lot with them. They said they see 2 possible issues that I’ll mention later.
Yesterday
I went with Seb and Sofie to build a desk for them. We scavenged through the garbage bins for pieces of wood :D. People put stuff near garbage bins that are quite good. So we found stuff. We built a desk. (photos are from when we’ve built Seb’s desk a few days before)
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NextIn this entire time I kinda felt sick. Stomach sick. I realized my pee is dark and it looked like blood. It was for sure blood. Again! Fuck! I then realized that 2 days before we went to a big hike and I did a ton of effort…perhaps the story repeats! Fuck. I said I’ll take it easy.
Today
Last night I worked a lot on TROM and at around 5-6am I started to feel some stomach discomfort. Nothing unusual. Went to sleep. Woke up. I still felt that discomfort. Went to the bathroom and peed. Rainbow? no. Fanta? no. Cola? yes. It was blood. Quite a lot. Confirmed. It is happening again. The entire day I kinda peed blood, without even doing any effort. So that was odd. I also felt uncomfortable and sick. I got concerned a bit to be honest because it confirms that something is happening for sure, and it didn’t just go away. Something is wrong with me. But what?
Let’s pretend to be doctors. Let’s analyze.
I am peeing blood. It seems like I do that all the time, but it is microscopic. At times I pee a lot of blood (macroscopic). Losing a lot of blood it is a concerning sign because it means that something inside you doesn’t work properly. So we need to find the source.
I also pee proteins.Like M&M’s, Twix, or Mars. 🙂 Which means the kidneys are losing proteins. It is a leakage somewhere. We know that for sure. Except these it seems everything is ok with me. Based on these, the issue is for sure coming from the urinary tract. Kidneys, the tubes that go to the bladder, the bladder itself and the rest. It cannot come from anywhere else. We isolated it. Let’s catch it!
Now:we did 2 full abdominal ultrasounds, a ton of pee tests to test for infections, cancerous cells, and a lot more. Blood test and some physical tests. The camera test too (Remember? I don’t!). Based on all of that my assumption is that the lower part of the urinary tract is ok. No bladder or prostate issue or anything in between. Which is great! I am confident that’s the case. So we are left with the upper part of the urinary tract to investigate. The tubes from the bladder to kidneys, and the kidneys.
The kidneys.
These evil twins that have a problem with the censorship (filtering). They let some stuff out, and not other stuff. Mine got hacked and their algorithm seem not to work anymore.
The kidney specialist said we are now investigating 2 things:
1. a genetic defect that makes the tubes inside kidneys be very thin so they leak proteins and blood into the urine
2. an autoimmune disease that deposits certain molecules in the kidneys and make them fail over time – that’s what I understoodThe first is a no problemos! You can live with that for the rest of your life and experience no problems. But it might be the other. A progressive disease is…well….progressive…so it gets worse over time. I barely found some info about these issues. They seem to be very rare. So, the first “option” doesn’t seem to produce visible bleeding, so I am thinking it must be the second. So the second might be split into 2 kind of diseases as I’ve read here. But mainly it is this oneand it seems like I fit the description pretty well.
To summarize:it is a disease of the immune system. Your immune system fucks your kidneys up. If it is an aggressive form there are a variety of diseases that are occasionally associated and discovered while doing the investigations for this disease, like cancer or heart failure. But seems to be rare. So the disease can be moderate or aggressive. It can (and probably will) lead to kidney failure though it takes many years for that to happen. There are very few people suffering from this disease so not many studies went into it unfortunately. There are no treatments, only ways to maybe slow it down and manage it. In the end you may need a kidney transplant and in some cases, even after the transplant the immune system will do the same shitty things to the new kidneys. Jerk! Though I suppose that also takes “years in the making”.
Why I fit the disease:
- I experience visible hematuria from time to time and microscopic hematuria always (it seems)
- I am leaking proteins in the urine. Hematuria and Protenuria are almost the “proof” that you have the above disease – in other words people with the above disease experience these 2 together almost all the time
- This disease seems to be diagnosed when you are in late 20s early 30s. I am right in there :).
- I’ve read that at times physical effort leads to visible hematuria, and if that’s the case I fit 100%
- If the disease also affects other organs then it may solve a mystery: over the years I’ve had multiple symptoms without explanation (like abdominal pains, tingling sensation in the body, flue like symptoms, and more – see here).
Why I don’t fit the disease:
- This thing started when I did a massive amount of effort in May. Then it was 100% connected to the effort I was doing. I can’t find anything specific in regards to this. Except these 2 days, I didn’t bleed “out of the blue”, and even these 2 days I am pretty sure it was because of that big ass hike. Great one btw. I loved it. We found a cave and went swimming through it. It was small. But cool.
- I don’t have any other symptoms except the above ones.
- Whenever I have this issue I also have stomach discomfort – lower discomfort – and a kinda’need to go numero dos. It is so obvious that I kinda know when I’ll bleed or not. Tho’ kidney problems can create such symptoms.
So. It is a good possibility that I do have this disease.In November I’ll have to provide more pee samples, like collect pee for an entire day in a big jar :D, to test for any issues with my immune system. And then they will take a tissue sample from my kidneys. We are getting close to solve this mystery! I am curious as fuck!
In 2 days I have another appointment with the urologist. I don’t think is much to do there if you ask me, but I may be surprised in an unpleasant way. He’ll probably tell me about the cytology test results, but even if they find some “cancerous” cells, they are from kidneys probably. Hope not. But the most likely disease is the immune one. And if that’s the case then I’ll deal with it! In the worst case scenario I may need a kidney or two for transplant in a few years (or a lot more years) time. And I am already bombarded with offers from these nice TROM people haha. If I have too many offers, I’ll sell some and pay for our servers haha.
I am now sitting in my comfy gaming chair, writing this blog in Collabora from TROMCloud 🙂 thanks to me, Alexio, and Stoic. I have a lot of news to tell you about ;). My health issues will probably continue for the next months or years and I’ll update this post when I find something new. So probably I just have to get used to it.
This November I want to plan for the next TROM meetup for the next year.We want this to be a yearly thing. I want to do cool stuff, and I’m already doing a bunch of. My life changed so much these past months, for better or for worse, but mostly for better. I am surrounded by the most awesome people. Thanks to them, and their kindness, I am able to cope with these in a decent way ;). Else I would be alone and stressed.
And if you want to donate a kidney, just in case I need one, calm the fuck down! There are some other people on the list so behave yourself! 🙂
To be continued….
update: 28.09.19 - giving birth to a meteor (almost)
After I wrote this blog post I decided to use this cool new app from the healthcare system here in spain. They really have a cool app where you can chat with a doctor, call them, get health tips based on where you live, etc.. So I said “Hi” on their chat. “You know, I’m peeing blood for the past days” I continued. I explained my symptoms and lucky they spoke english so they decided to call me. They suggested it is better for me to go to the emergency room because peeing blood may mean there are blood clots forming and you may not be able to pee. That was a selling point for me. Imagine going to pee and not being able to. Or it stops mid-way. I really don’t want that cause then they have to somehow “fix” that. So, I went to the emergency room. I felt ok. They did a few tests: physical, blood + urine. Said all seems fine but yeah I still pee blood and they are gonna’ rush with that kidney test so I don’t have to wait 2 more months. They said I could do it the next week. Again, a selling point for me. I was happy. I could not participate to tromcast but I was watching it live from the hospital :):
I could only watch for some 30 min. I liked it. These guys are great :).
So now I was heading home and I had a slight lower abdominal discomfort. While on my way home, in the car, the discomfort got more and more uncomfortable. Went to my parents’ place to eat and yeah, I could tell, it was a bit uncomfortable but not unbearable. Got back to my place at around 10pm. The guys were done with the cast and I decided to meet them and go for a little walk. Me, Georgi, Seb & Sofie, and Aaron. The chosen ones. After some 20 min or walking my lower abdominal pain got more painful and localized. Left side. Back. Radiating to the front. But I thought I went to the emergency already and they saw nothing wrong so that gave me the confidence that nothing could kill me now :D. On our way back the pain got so intense that I could not walk very well. I had to take 2-3 breaks, sit down, then continue. I thought I’ll go home and stay in bed, get some sleep because the previous night I didn’t sleep much, and will be fine. WRONG! VERY WRONG!
Came home and tried to go to sleep early, like at 12am (yeah, that’s early for me!). The pain was growing in intensity and I simply could not fall asleep. I was sweating like a pig and it was a very bizarre night overall: super tired, a lot in pain – sleeping for like 5 min then waking up for 1h, then again falling asleep for 4 min and so forth. What’s a dream? What’s reality? Why isn’t this mother-fuckin-pain going away? I started to get worried. I said that I’ll go to the bathroom and if I still pee blood then I’ll call the ambulance. And it was indeed a very bloody pee. 6am and I texted Georgi that I’ll call the ambulance so they know (she and my parents). Called 112 and through an English translator I managed to summon an ambulance. I went to the hospital again. This time in pain. Georgi came with me.
There the pain got so intense that they gave me an injection straight away. Haven’t had those in like 15 years since I was in school – the injection, not the type. Butt injection. 🙂 It was very nice! 🙁 The pain went away so that was fantastic. They did an ultrasound and there we go. Finally we see something. My left kidney was ‘inflated’ and there was a meteor in there. Do you know that meteors, those “shooting stars” are only the size of a grain of sand? That’s interesting because they produce so much light when they enter the atmosphere. But anyways, I had one there – self-made, earth-like. I knew that I had these (not-cool-people call them “kidney stones”), and I suspected this was the reason I am peeing blood, but the doctors seemed to dismiss this “theory”. After the confirmation of the inflammation and the meteor, hell broke lose on me. Apparently pissing one of these (meaning getting it out of the kidney in a natural way) is one of the worst pains a human can experience. I’ve read that online. I’ve felt it in the hospital. There I am while I was dying:
It may not look like, but I was dying. The pain is so intense that if someone would give me 1 million euros to walk 100 meters in the next 20 minutes, I would have lost that million. The pain was in my lower left side of the abdomen, radiating to the front. Imagine a huge knife stabbing you in the back while at the same time twisting itself around. I had to call the nurses twice to give me more drugs. Last drug was so nice I felt dizzie and happy at the same time. And no pain. But my friends, that pain was intense. Never experienced that in my life. I’d do 5-penis cameras tests instead of one night like this.
The pain was managed with painkillers and I went for another ultrasound. Surprise! No meteor 2 hours later. Apparently it went out of my kidney. Yes! We had some answers. From where the pain was coming, from where I was bleeding. Or was it?
After all of that, some 7-8 hours in the hospital, I came back home and they recommended me some pills like Paracetamol to manage the pain. I took one pill at 3pm. I didn’t pee blood that visibly anymore. But at around 10pm I had a massive pain in my middle lower abdomen (front this time). I had to stay in bed for 1h and after I took another Paracetamol it went away. The hospital also messaged me to come by next day to check my kidneys, just in case.
I went to sleep at 12am and slept till 8am. Slept very good. No pain. Great!
Today, at the time of writing this section (hence the date in the section-title), I went again. I already know the drill: get naked, spread your legs, and start whistling. Oh wait that’s for something else :D. So yeah, I go there, again blood sample, urine sample, physical tests. All seemed fine except, again, I have microscopic blood in the urine. They could not tell me if this is a kidney-meteor related issue or it was since May, but they are now doing more tests just to make sure all is ok with me. So my next tests are: 24h pee collection to test for that autoimmune disease (I have to provide the sample next week and have a schedule with the specialist on 7th of november); a CT (radiology) scan with a contrast substance – this is a detailed scan of the kidney (and not only) where they inject a substance in your bloodstream and then scan your abdomen – this one can detect obstructions, but also tumors and other diseases; plus I also have an appointment with the urologist. Damn, many! Never ending 😀 – but is fine because we get to investigate all of it in detail. If the reason for my bleeding and symptoms is this meteorite (or a few of) then that’s no worry at all, but perhaps the doctors want to make sure that is nothing more serous than that.
Now I have no pain but I am concerned the pain may come back, though perhaps now that I almost gave birth to that meteor, is not gonna’ hurt as much. It may take weeks for the meteor to “go through the atmosphere” of your body, but unless it blocks something in its way, it should not be painful or as painful. I have 2 types of pills at my disposal if so. Let’s see. So far I am happy that the theory of the meteor is now a reality and it is perhaps what caused me so many problems for the past months. But it may not be the entire story. We shall see.
To be continued….
update: 02.10.19 - the meteor strikes again
Last night I wend for a walk with Georgi and I started to (again) feel the damn pain. I barely reached home. Stayed in bed, hoping it will go away. I was confident that now I had some painkillers at my disposal. I could take 1 every 8h. I took one at 10pm and the pain was kinda gone. But it came back in like 2 hours. A 5-6 pain. More to the front left side of my lower abdomen. No way for me to sleep with that pain. Around 2am it become a 6-7 and at times an 8. It was growing in intensity. I could only take the next painkiller in like 5 hours. Too late. Messaged Georgi and we decided to go to ER again. It is 40 minutes away. Good decision! We reached ER and I was in serious pain. The doctors recognized me already. They gave me a painkiller directly through my veins and the pain went away. So good!
My arms look a bit like those of a drug addict haha, because of so many needles that poked me over the past weeks. We had to stay there some 10 hours or so. A lot. Very tired. Managed to take like a 30 min nap in that hospital bed. Basically it is likely that the meteor travels from my kidney to the bladder and in its way there produces more damage, thus the pain. It may happen again….maybe even today. But the good news is that this is 99% likely the cause. I mean, it is the cause of my past weeks symptoms. Probably the past months symptoms but we still need to do more tests for that. The good news is that today they basically didn’t find blood in my urine – first time in the past months. This makes me think that the meteor was the one irritating my kidneys and making me pee blood since May. That’d be a perfect scenario ;).
Now I can take painkillers every 4h so that helps me a lot: mentally and physically. I will only take them if I have pain. So far I am ok. The doctor said the meteor may take another 5-6 days to leave the atmosphere and land in the Toilet ocean. We shall see ;).
Something else now. These past years and especially past months, I had to go to the hospital many times. The last week was a lot of that for me. In ER they “transported” me with a wheelchair (just in case) – cause at times I was on painkillers or on perfusion. They would take me to do an ecography for example, and they would put me in a short line of patients waiting for that. I only shared these rows with super old people who were very crippled. I was also, many times (or all the time), the only “young” patient in the ER. I saw this guy once, with swollen legs, you could see the veins and some dark patches on his skin. Very old. Could not walk. Coughing slowly, almost not willing to cough anymore. He was my neighbor waiting in line. I had these weird feelings about my life….I realize that I am super young still and I should use my body more. Maybe to go places, travel, hike, see stuff, meet stuff, experience stuff. Because one day, I’ll end up like my in-line neighbor. And I won’t be able to use my body. This is a sad feeling, but there is no escape from that. Yes, I find a lot of value in my online life/work, and yes I also go for short hikes and go out daily…I really like my life when I’m not sick. But I’m also thinking that my body will cripple and I will miss it at one point. To be able to walk, run, play, and just feel tired and that’s all, is an amazing feeling. The older you get the more problems you’ll have with your joints, muscles, other health issues, etc..
As much as I praise the Spanish state healthcare system, I don’t want to experience it very often. I want to just live and enjoy life. Take it in.
Life is like an ice cream. If you don’t lick it, it will melt 🙂
Luckily I am still healthy despite all of this. Maybe there’s only the meteor. Maybe I even have an autoimmune disease that won’t affect my life that hugely. regardless, I am still healthy. And young. I only experienced 31 Summers on Earth :). Maybe, like I talked to the most-traveling-traveler Sasha a few times, I may take a slight break from my online life at one point and just buy a motorhome and go travel for a bit. Just some nature, no thoughts about the fucked up society. To see how it is. We shall see ;).
To be continued…
update: 14.10.19 - probably I'm fine 😉
I had a CT scan of my abdomen (kidneys and gallbladder and all in-between). All great. Except a few more kidney stones (very small ones), everything is fine. They will “wash” away with water. DRINK WATER! And I’m already doin’ it! I used to drink Coca-Cola all of my life. Not anymore. Now I wash my insides with water.
Today I went to the urologist and only stayed there for like 2 minutes because everything was fine he said. I only have to do 1 more test and have 1 more visit with the kidney expert. But everything is perfect at the moment. Yellow pee. No pain. Let’s do stuff! 🙂
update: 07.11.19 - I'm fine
So, after all of this scare I can finally say I am FINE. I went today to the kidney specialist. After liters of urine samples and blood, CT scan, ultrasounds, penis-camera, and so forth, we have some kinda definitive answers: the meteorite fucked me for the past months. It fucked my kidneys to the point of degrading the function of my left kidney a bit. Even this last test (the 24 hours urine collection) showed that my left kidney is still not 100% functional, but close to that. Very likely it will recover. They still found a little bit of blood in urine but they said these can be normal after getting hit by that meteor so hard. Will do another such test in March to make sure all is 100% fine. So, ALL GOOD PEOPLE. Fuck me man, this was a scary experience. But kudos to this healthcare system here that took care of me, kinda trade-free. 😉
I won’t say this is the best time of my life since I’ve gone though all of these, but I am definitely gonna make it the best time of my life from now on. It will always be the best time of my life, till is not ;).
