NEW BLOG POST:
The best/worst time of my life.
Read it on my website (recommended):
tiotrom.com/2019/09/the-best-w…
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.
Previous
Next
I 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.
Previous
Next
This 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.
Previous
Next
A 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.
Previous
Next
Then, 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).
Previous
Next
But 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)
Previous
Next
In 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 understood
The 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 ;).
NEW BLOG POST:Many issues striking at once
Read it on my website (recommended):
tiotrom.com/2016/05/many-issue…
Or read it here:
Lately I could not do much work for any of the projects I manage (TVPMagazine or Videoneat) and lots of problems accumulated and developed in a very short period of time. Here’s what happened in order:
Some 2-3 weeks ago I had a very bad indigestion and pressure in the right part of my upper abdomen.
After a few days I had flu like symptoms and some other pains throught my abdomen, some in my arms and legs, some in my chest, but mostly that awful right side upper abdominal pain that was almost constant 24h a day.
A mole (red one) appeared from nothing on my right knee and was growing quite fast.
I went to the hospital for the indigestion and abdominal pain, but the doctor said it can be a viral infection and said it will go away in 2-3 days, then programmed me to a specialist for the mole and said it does not look like a dangerous one.
I had my mole removed in a few days time and they said it does not look like a dangerous one, but to check back in 1-2 weeks with my personal doctor.
In the meantime my health situation did not improve and I lost 4kg in 1 week.
I became very weak physically and while in a supermarket ‘hunting’ for food, something I always dislike, a sharp pain in the back right side of my chest. It was accompanied by heart palpitations and a feeling of weakness, almost passing out. It lasted for 20-40 seconds but it was very scary.
I went home and later on and decided to go to the emergency room to make sure I have no big health problems. I waited 2 hours in the waiting room. They did some basic tests on me (heart rate, oxygen levels, etc.) and said it was nothing severe, but they don’t know what it was.
Until this point I also had some sharp pains in different parts of my body (not like the big pain in my back), still indigestion, feeling weak, could not eat much, etc..
Next day I was at home alone and a sharp pain, same kind, this time right upper front chest with the right arm, plus palpitations and I was to the point of passing out. I managed to send a message to my sister and she and my parents came to my place with the car and drove me to the emergency room again. This time I went straight to the doctor to consult me. They did and EKG to check my heart, and other physical tests for half an hour or more. They didn’t find anything abnormal and said they don’t know what could have happened.
Next day same kind of pain in the lower right side. Lasted less, but still palpitations, still a sudden feeling of weakness and feeling like passing out. This time I didn’t go to the ER.
After 2 days I went back to my personal doctor to try and figure out what is going on. I had fewer issues with the indigestion by that time, but started to have more flu-like symptoms and headaches for 2 days. I also have a rash on my face that appeared a year ago and tried a few lotions but didn’t help much, and under all of this stress with the other health issues, it started to become more uncomfortable. I asked my doctor about my mole and they had no results still, then talked for half an hour about all of my issues and he said it is very likely to be a virus infection. I relaxed a bit because I managed to ask the doctor several questions that I really wanted to ask like if it is an issue with my gallbladder, pancreas or liver, and so on, and he said he does not see them as the cause. The viral infection is the cause in his view. But he still scheduled me to a full blood and urine tests, though in a month time…. He also gave me a new lotion to try for my face, for the rash.
Now I was better, no more indigestion yet still some pains in the right upper side of my abdomen from time to time. I was happy about the new lotion for my face (new treatment!, yeah!), used it for the first time and boom: huge rash on my face and very itchy and a burning sensation. The doctor said this can be normal, and I accepted it, but it was a new and very uncomfortable pain I had to deal with on top fo what I endured so far.
I woke up a day after using that lotion with very bad rash on my face, itchy and burning, and I realized I have no electricity in the apartment. I talked to the landlord (because I pay rent, is not my apartment) and she started to say all kinds of BS that made no sense about why I had no electricity , like “sometimes the electricity company turns off the power for some apartments because they think no one lives there”… She said the power should get back next day. I always paid my rent and bills the exact same day she sent me the bills. At this point I had no electricity, a very uncomfortable rash on my face, my body was hurting from the virus, but I said tomorrow will be ok.
Not at all, this time the landlord was like “oh, they found an electricity bill that was not paid from 2014, etc….and cut off the power supply but it should get back in 24h”. BS again because I had no electricity for 3 days while having those health issues. I could not cook any food, nor buy food because the fridge was not working of course. I also lost some of the food from the fridge because it got spoiled. Luckily my parents live in the same city and I spent most of the time there.
Today (at the time of writing this article) the electricity is on again, my rash on the face is still bad (looks and feels like 70% of my face was severely burned) but hopefully will improve. I started to have again some symptoms of indigestion though, and I still have some flu-like symptoms (from cold hands, sweating sometimes, to some abdominal and chest pains and a runny nose). It is nothing severe at this point (except my face rash that is very uncomfortable), just mild symptoms, but still uncomfortable overall.One thing I hate so much from the daily life of a human is buying food and eating. I always hated that because is super difficult to manage this on a daily basis. I have no money to eat out so I need to buy the food, cook it, deal with the dishes and other such small things that over time become stressful. Also, I find all food the same, same taste, same shit. So I have no clue what to eat. If there was a pill that I can take and never eat again I will.
Right now I can only ‘hope’ for my situation to get better until I will have my blood and urine tests done next month (lots of time until then). Will try to eat boiled stuff (from animals to vegetables and many fruits) and try here and there to do some work for TVPM. Speaking of that, TVPM is another concern that I have (even before all of this – and some of the stress with the magazine made things much worse) because I manage everything for that project, except proofreading, and we are so low on the financial support that I can only keep on continuing 2 more months or so – plus some other stuff that I and TVP either fail to communicate or one of the sides is weirdly off the bit in regards to TVPM (will make more posts about this in the future). But what I care is to be healthy ;), the rest can be solved later on. If I won’t be able to pay my rent then I’ll move to another place and will do whatever I can for TVPM with whatever support I get, or if I and TVP fail to communicate then I will still make such projects (because I mainly make them alone anyway). Lots of exciting stuff to write about – can’t wait for the book on Language to be released ;). But right now I am focusing on my health.
UPDATE (02 July): I am feeling much better, though I still have some abdominal pains from time to time, on both the right and left side of my upper abdomen. Less or no indigestion issues or other kinds of issues for the past 2-3 weeks. I am taking some pills that another doctor recommended, even if they do not know what caused (and maybe is still causing) my problems. I had several tests to confirm that there is no virus or bacteria and an abdominal ultrasound that only found some polyps on my gallbladder. My GP and the specialist said they don’t look like anything dangerous but my GP said I should do another ultrasound (a more detailed one) to see what it is. In the meantime the rash on my face almost disappeared (not sure why) but the doctor said I have “Seborrheic Dermatitis” and these flare-ups on my face can come and go just like that….. I also moved with my parents for now because I wasn’t able to manage my life financially. This allowed me to buy a drone and a good camera and microphone and work on a new video series based on TVPMagazine or TROM-like subjects. We recorded the first video and we want to make 2-3 more before we release them. Hopefully I will get more financial support and get back to my ‘normal’ life 🙂
I also had a discussion with Roxanne and another TVP ‘activist’ about TVPM and TVP and why TVPM is not endorsed by TVP on the main website and other issues, and I am more confused than before. The only thing I can say is that Roxanne really wants the magazine to be more promoted by TVP and she thinks this project is very important. So I will talk more to her than to anyone else around TVP to see what we can do about it.
All in all things are much better now, but I am still waiting for the next ultrasound and I want to do more investigations about what caused my issues. I will post more updates here.
UPDATE (14 July): I went again to the hospital and said: “Look, you said in 2-3 weeks you are going to call me for the detailed ultrasound, now is 4 weeks…” and through a miracle they were able to schedule me the next day… So how come I had to wait for so long to schedule me (they said they can’t schedule me in less than 2-3 weeks) and then when I insisted they could do that next day!? Honestly, the healthcare system is messed up.
So, I had the other more detailed ultrasound done and they confirmed that I have polyps on my gallbladder, but they said they are less than 4mm and that means non-cancerous, which is amazingly great because I feared that. Just to understand why I feared that a lot, gallbladder cancer (cancerous polyps) is one of the most deadliest cancers out there. Did you know that? I didn’t up until having these digestive issues. The doctor said it is not an emergency but that I will have to remove my gallbladder in 1-2 years or more. I think that’s the case because these polyps can become cancerous. He also said my abdominal pains in the right side might be due to these polyps.
My next appointment now is with my GP, in 6 days, because although everything is great so far (nothing serious in regards to my health) I still have some abdominal pains all over my abdomen: more so in my left side now. So I need to insist to have my stomach and colon checked to make sure there is no bigger issue. I still experience some indigestion, and overall if I eat fatty foods, or cooked in oil, or dark chocolate, or drink milk or even coca-cola, I immediately experience issues (pain and indigestion) – so I also need to check if I have any intolerances to certain foods/ingredients. Thus, my journey in regards to my health issues may go on for many months or years. Not bothered by that thought right now, the only main thing I want is to make sure we exclude severe illnesses from the list. So far several are excluded 🙂 which is great!
UPDATE (31 July): I managed to opt in for a private health insurance here in Spain for 50 Euros a month to have access to much cheaper and faster services (10 Euros for an MRI or such a test is better than 300-400 Euros). I should be able to get to see a specialist much faster now. “My GP”, although a nice human being, is so slow in sending me to tests and specialists and it takes way too long to take any advantage of the state healthcare system here in Spain, that I need to give that up. I am still waiting for a phone call from him to see if the specialist from the last ultrasound where we managed to define the ‘polyps’ on my gallbladder, recommends that I need a surgery to remove my gallbladder or not. In any case I will ask for a second opinion through my private insurance and from another specialist.
I feel better for now, no more big issues (pains or indigestion – yet still experience both from time to time) but I will still want to investigate further becasue for sure I have many food intolerances. It costs a lot to do that test, 250 Euros, but I may do it in a way or another. Will see. When you don’t have money you need to manage your health in this pragmatic manner so you don’t spend much from what you already don’t have.
When it comes to your health do whatever you can to investigate and solve your issues as not many will help you. So you have to insist!
UPDATE (17 October): A lot of time has gone by since my last update but here’s another one – I don’t need gallbladder surgery yet, so I will only need to do an ultrasound from time to time to keep an eye on those polyps, and only if they are growing I will have to remove the gallbladder. I managed to see a specialist for the rash on my face and she recommended some lotions that so far are working, but I have to use them on a daily basis. The treatment my GP recommended was not good she said and I should never use it. I managed to make some other appointments to doctors through my private insurance but for more detailed tests I have to wait 3 more months so that I can make them at lower costs (that’s how the insurance works – wait 6 months from the moment you make the insurance to have access to all services). Right now my health is alright, no major problems, but also no diagnosis. Doctors told me it can be the stress that caused those issuesadn considering the stress I’ve been through for those months then it is plausible. However I will still investigate these issues once my insurance allows me to access all of their services.
I still get some pains in my right upper abdomen like I did before, and it is likely to be triggered by the foods I eat, so it could be the gallbladder. But what changed for me the most for the past months wast the stress level that diminished considerably. So, it seems that a combination of diet and stress can trigger or diminish such health issues.
UPDATE (02 May – 2017): Almost a year later. Managed to do some proper medical exams through my private health insurance – upper endoscopy with tissue sample, a more detailed blood test, and lactose intolarance test. Also talked to a specialist who recommended these tests and even performed the upper endoscopy. Been taking some medicine he recommended, and in general everything is fine. Apparently, I do have some ‘bad reactions’ to certain foods that I’ll have to avoid, but the rest is all good. He recommended to take some medicine for 3 more months then I’ll see him again and unless I feel very sick (which I am not at all) then all is fine. Basically all is good, I am feeling good, the tests were negative. Happy life so far :).