More Health Updates - Autoimmune and Liver Stuff by R.P. Lauer - Distant Web

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More Health Updates - Autoimmune and Liver Stuff
More Health Updates - Autoimmune and Liver Stuff by R.P. Lauer - Distant Web
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I apologize for reusing an old image, but A) I'm being lazy, and B) it's actually relevant anyway...

WARNING - The following post will contain personal information and detail that you may not want to know, specifically in the TMI range. There is also some strong/salty language as well as some colorful metaphors. Read at your own discretion.

I am currently in a bit of a health situation, but before I can fully explain what's going on right now I have to take you back a few steps. So please bear with me for just a moment. First I will cover a few different paths that will seem completely separate but will eventually merge to at least some degree.

Some History

As I have talked about before, I had a rash on my back for several years that I finally got checked out with my primary physician and she thought it might be a sign of Lupus. She got some blood work done which seemed to confirm at the very least an autoimmune disorder of some kind and sent me off to a rheumatologist. To make a long story short, that led nowhere.

For about the same period of time that I had that rash, I also developed a pretty bad case of hemorrhoids (both probably went 4 to 6 years before being checked out). This was a frustrating road because as soon as I did finally get them checked out, I got bounced around to specialists who didn't seem to want to do anything other that wait and see.

Moving on, I have a bit of a history with the over-consumption of alcohol. Any doctor would call me an alcoholic due to amounts alone, but I personally have a massive problem with that label. A huge element to alcoholism hinges on addiction, a dependency on the substance, and I have never been ‘addicted' to alcohol, nor have I been dependent on it. I am addicted to nicotine, and I have seen others who were addicted to alcohol. When I drank alcohol, I did it because I wanted to, not because I had to.

Doctors would always want an average of how much I drank, but that is honestly rather impossible because the range was all over the place. I would go weeks without having a drop, but then I would go a month or two drinking at least some amount every day. That amount could be a single beer, or an entire six pack or even more (typically when with friends).

But yes, I did over indulge and I know that. I knew that then.

Finally, about a year and a half ago (give or take) I started to notice some changes in my mental and physical state. It's hard to explain, but some brief points of note include constant fatigue, physical weakness, and some massive issues in regard to my memory and concentration. With that last point it's hard to explain, but I have lost some bits of memory and other bits of memory are a little untrustworthy. I also have an extremely hard time remembering words; I know what I'm trying to say, I just cannot come up with the right words. There's a feeling that I know the word I'm trying to say and what I come up with isn't it, but I can actually grab what I'm looking for.

So around the beginning of 2019 I decided I needed to make some serious changes.

First and foremost, I stopped drinking. I honestly couldn't say when other than around the beginning of 2019 because I simply didn't make a big deal out of it, but I knew that I was over drinking and that that couldn't be helping, so I stopped. And here is why I have a problem with the label of ‘alcoholic' as when I stopped, I simply stopped, and there were no side effects. No DTs, no cravings, no anything. And honestly I don't really see myself ever drinking again (it's been about a year now).

Moving on, the second thing was I started trying to get all of my various health problems dealt with; this was a slow process as there was kind of a scale for what was worse in my mind. I had stopped going to the rheumatologist simply because he wasn't doing anything and the expensive visits were nothing more than what could be covered in an email so it just wasn't wroth it, but I did continue getting tested with my primary physician. I also saw a neurologist who found nothing wrong (another nice waste of money).

There were other things here and there but nothing noteworthy, so let's jump ahead a bit and catch up to this year.

Cut To Current Day

I finally saw a surgical specialist for my hemorrhoids. I had three internal and three external and I was given a choice; either surgery which would take care of everything in one go but had some risk and a recovery period of intense pain, or some multi-step procedure that would involved tying rubber bands around the internal hemorrhoids one by one about a month apart which would make them fall off and wouldn't cover the externals.

I chose surgery. And she wasn't kidding about the pain during recovery. I won't go into huge detail here, but my ass was on FIRE. I was given some pain meds but those were only going to go so far; I was not going to overdo it with what was prescribed. So the surgeon suggested a regimen of alternating between Advil and Tylenol every two hours; basically take a Tylenol (extra strength), then two hours later 3 to 4 Advil, then two hours later back to Tylenol.

I didn't really want to take that much, and I tried to keep it low and space it out more, but the first week and a half to two weeks were brutal; if I went two and a half hours, or three hours, the pain made me realize that I couldn't do that. I legitimately cannot stress enough just how bad the pain was, so as much as I hated taking that many pills I did what I had to do, and I did it under a doctor's suggestion.

After the first two weeks the pain lessened and I started stretching the time between doses significantly; I only used the prescription meds for about the first week or so lessening the dose each day until I was only talking half a pill per day (just before bed to sleep).

Speaking of sleep, that was nonexistent for the first few weeks which did not help.

Anyway, around the end of week three (the beginning of week four) things got weird, mostly because that was March 16 and the current Pandemic started to get bad and made things even more complicated. I was supposed to have my post op appointment that day but it got canceled and rescheduled for the 18th. Also on that day my son wanted to come home for the week as classes were canceled, most students had gone home, and he wasn't comfortable staying. That morning he had been emailed saying that classes would resume on the 23rd and while most would go online, a few (one of which he had) would have to remain in person.

So because my appointment was canceled and I was starting to really feel better my wife and I decided to go get him. And after three full weeks of being stuck at home I really needed to get out.

Over all the trip was ok; we basically went straight there, grabbed him and a few things he wanted, and went straight home. The next day however, my son woke to find out that ALL classes would now be online only or canceled if they could not be done online, and the campus was to be closed for the rest of the semester. All students had until the end of week that week to vacate IF they were still on campus; those who were already gone were supposed to stay away and get their stuff at a later date as yet to be determined.

So here's the thing, my son left behind some important books he needed for his classes, as he thought he would be returning; he had been told just the day before that he WOULD have in person classes. The other thing is that I woke up that morning feeling sick to my stomach and kind of feverish. He and my wife had to go without me and actually move all of his stuff out.

And Now, The Real Situation

Overall that went fine, but my health began to plummet. To shorten this up a bit I'll skip some of the minor things and pick up that Friday (I ended up canceling my post op due to how bad I was feeling). Sometime on Friday (the 20th) I realized that my urine was, and had been extremely dark for most of the week. This is extremely unusual for me as I drink a lot of iced tea every day, somewhere between a half a gallon (at least) to about a gallon. And the iced tea I drink is straight black tea, no sweeteners, no flavors, and it is exceptionally weak. I have a 1.5 gallon pitcher and I use 4 regular teabags and 1 decaff teabag; my kids call it ‘slightly flavored water'.

Bottom line is that I should never have dark urine.

Another thing I thought I noticed was that my skin and the whites of my eyes had a yellow tint to them. I couldn't really tell if what I was seeing was real or just the lighting in the bathroom, but it did look unusual to me. By the time I really noticed all of this, it was too late in the day to even call the doctor, and with the pandemic going on, there was no way in hell I was going to the ER.

My wife called the 24 hour number for my surgeon on Saturday and the doctor on call told her that the symptoms did not sound directly related to the surgery, but that I should be checked out ASAP. Monday morning I called my primary physician's office number who informed me that they were limiting in person appointments due to the Corona Virus. The receptionist took down my symptoms and said someone would get back to me. That afternoon I finally got a call and at first they wanted to setup either a phone or video appointment, but I said that what was going on probably had to be examined in person, especially the urine.

So they got me an appointment for the next morning, Tuesday the 17th.

When I got there, they took a urine sample, and once those results were in the took some blood. About 30 minutes or so later, the doctor I saw (my primary being on maternity leave) basically turned my entire world upside down (and possibly needlessly to the extent that at the very least she could probably use some lessons in tact). She walks in after the results were back saying that I was in full liver failure.

First let me wrap up this particular visit so I can get to ranting about this doctor, and doctors in general. They took more blood with a whole battery of tests in mind, including testing for Hepatitis A, B and C, none of which make any sense (I've been married for over 20 years and do NOT do drugs, including and especially anything involving needles [fuck needles]). But do what you gotta do so fine. She also ordered a sonogram which I was to go right next door to do right away, and ordered a referral to a specialist.

So here's a mini rant:

She stressed over and over that I was not to consume any alcohol. I get it, once is more than enough; I haven't consumed ANY alcohol in about a year and even if I had thought about drinking again (which I hadn't and still haven't), I am NOT stupid enough to drink while an active issue is going on with my liver. I went to THEM because I knew something was wrong. This only needed to be told to me once. And this is exactly why I hate being honest with doctors; they just LOVE to zero in on easy explanations. I could go to a doctor after having been shot and they would tell me I need to stop smoking because smoking is why I am bleeding, NOT the fucking bullet hole. And trust me, I have experience with that sort of lazy doctoring.

Anyway, she also told me over and over again that I'm not to take any kind of pain pills, something else that only needed to be told to me once. I was already past all of the pain from surgery and had already long since stopped taking anything. I am not one to typically use pain pills, even Tylenol or Advil, unless absolutely necessary and I had already told her this. I hated taking so much while recovering but the pain really was THAT bad. The amount of Advil alone that I took during that time was more than the combination of Advil AND Tylenol that I usually take in a full year.

I get having to make something clear, but come on. If someone has to be told something as important as this more than once, they probably won't get it no matter HOW many times you tell them. And I had already made all of this perfectly clear; I don't drink anymore and that is simply how it is. I don't normally take pain pills, and with my liver going to shit I don't need to be told twice and that is also simply how it is.

Also the bluntness on her part was a bit fucked up in my opinion, especially considering the next few days, but I'll get to that later.

I was also told to not eat any red meat, and let me tell you something; THAT is the painful part. THAT is the part that would have been justified in being hammered in over and over because THAT is the part that is truly difficult. Never before in my life have a wanted a fucking burger so badly as I do right now.

Moving on. I got the sonogram done and the specialist called within a few hours (this normally takes weeks) AND I got in the next day, the 18th (which would normally take even more weeks).

The Specialist

The specialist was really cool. He looked over the results, including those last blood tests (negative on all Hepatitis flavors) as well as past workups. He didn't stress over past mistakes like alcohol, and instead focused on now. He ordered more blood work, including a new ANA (the tests for autoimmune) which I took the following day (the 19th). He also just said to take it day by day, do what I could including drinking plenty of fluids and eat better, avoiding fatty foods, and to come back in a month to see how things were going.

He stressed that while the results aren't good, they aren't as bad as I had thought; I wasn't knocking on death's door as the other doctor had made out.

And for the most part, that is where I stand right now. The tests he ordered have come back, and while I haven't talked to anyone yet I have been able to look them over. It looks like I do NOT have any signs of an autoimmune which is interesting; I would love to know why my blood once spoke of autoimmune but now does not. The tests show signs of some scaring on my liver, as well as fatty buildups, both of which could lead towards a few different things. Honestly I think this is probably a direct result of taking too much Advil and Tylenol, as my liver functions were completely normal just in November of 2019 (yes, I was tested as recently as that).

I have drastically changed my diet as well. I have completely cut out red meat, pork and dairy, and I have been extremely careful in what I eat, watching things like saturated and trans fats. I have been eating salmon, and as someone who has never really liked fish I'm doing ok on that. I made some homemade spaghetti sauce and used chicken instead of beef with whole grain noodles. And I am doing my best during this pandemic complete with a stay at home order to do what I can in getting fresh fruits and vegetables.

The worst part of all of this really IS that it is happening at the same time as a world wide pandemic. I was straight up told that I would have been admitted to a hospital under normal circumstances to at least get all the testing done quickly and conveniently, but that wasn't an option because of what is going on. It's also been excruciatingly difficult trying to shop for all new foods with so many shelves being completely empty.

Fortunately I am feeling better already. My color is back to normal, in skin, eyes and urine. And I am sleeping a bit better overall, whenever my dog can be convinced NOT to sleep right on top of me. Unfortunately it has been surreal with everything else going on, and my motivation in other areas has tanked.

I previously wrote a book and was going through with edits and what not, but my motivation there is nonexistent now. Grated it hasn't helped that I can't seem to get true feedback since that is where I am really lacking at the moment, but oh well. I actually wrote a book length story (over 100k words in my second draft) and that alone is an accomplishment I never thought possible.

As for now, I will simply take this one day at a time and post again if there are any significant updates. Thank you to anyone who may be reading this.

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