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Scary Health Stuff But Important To Share š
4 weeks ago
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Hi everyone. So Iāve mentioned before that 2025 feels, in some aspects, like the worst year of my life. Or perhaps Iāve thought it, but didnāt dare say it out loud, because it feels so completely hyperbolic. I donāt remember.
Anyway. I should be happy. I have a happy life, and I am so fortunate in so many ways. Iām just really stressed the hell out. Iāve generally chalked it all up to the cats, or rather, to the havoc Romeo has brought upon our household, which, when so many cats are already in the picture, causes problems with all of them. I wonāt get into the details of that right now since Iāve written about it so many times. Even so, it really isnāt the end of the world and it should not be affecting me the way it is. I donāt think it would affect most people this way.
I have art I owe close friends for way too long which I have yet to complete (on that note: right now the couple of Christmas commissions, one for Snow and one for Kenny, and the commission for Wilk, are all on track to be completed on time: I finished several commissions in the last two months but have been too tired to do anything besides send them to the commissioners). My current level of delay would once have been unthinkable for someone with my ethics, and I have chided people, privately and openly, for finding themselves in similar situations. I blamed myself for this, naturally, and continue to do so, even though other circumstances are coming to light now.
All of this year I have not been myself, physically or mentally. I have intense joint and muscle pain, as well as constant tingling in my extremities. Iāve always bruised easily, but this too has gotten worse and longer lasting. My hair, which always fell a little due to my epilepsy medication, is falling much more. Some mild IBS symptoms Iāve had all my life have intensified in the last year. I am always tired, and my hands and feet are always frozen to the touch, even if the rest of me is warm. No amount of socks or blankets help. Sometimes I just start crying randomly, out of the blue, from how tired and stressed I feel. This, as you can imagine, is distressing to my loved ones.
This year I have not read, played video games, blogged, played with my toys, worked on my books or drawn in any significant capacity. My house is dirty, my relationships are neglected. I am always tired, and very sore. It often feels as though I am in a deep brain fog; thinking is difficult. This is the main reason I stopped blogging. Iām sure my friends, online and offline, have noticed that Iāve not been myself. Iāve blamed it all on the stress the cats have caused me, and this is a factor, for sure, but it should have been obvious that it alone would not have caused me to fall apart as I have.
Some of you might remember me mentioning the neuropathy issues way back in 2022 or thereabouts. Tests were done at the time, including one particularly unpleasant one in which small needles were stuck into my muscles and then little electric shocks administered through them. All results showed no apparent issues with me physically. āDrink waterā, doctors told me, or āyouāre just getting olderā.
Iāve had somewhat hypochondriac tendencies since childhood, so Iāve learned to accept such answers and move on with my life. I learned to live with it all: the tingling, the bruising, the cold, the intensifying muscle and joint pain, the feeling of dread in the pit of my stomach when I take a clump of hair off my hairbrush in the mornings or evenings, needing to rush into bathrooms at stores (and sometimes, depending on the time of day, even picking where to shop depending on whether I know a bathroom will be available).
Now, one thing I want to point out is that I get twice-yearly blood tests because of my epilepsy medication. These tests, fortuitously as it will turn out, check for things which other routine tests often do not. For several years Iāve asked different doctors about a specific level in my blood test that was always too low, in the āredā zone: alkaline phosphate, or ALP. I have results since 2017 and not a single one has ever been normal. Multiple doctors, including really good ones that I trusted very much, brushed me off. As it turns out, it is common for doctors to disregard low ALP. Because of the hypochondriac tendencies I mentioned, I thought I knew better than to research more into it. Google is most definitely not a low-key hypochondriacās friend. So I didnāt. Until recently.
It turns out, it is very, very unlikely to ever be āokā for that level to be low in oneās body for years. It could be my baseline, but it would be quite rare, just as many of the disorders (some genetic and incurable) that cause it are very rare. It should not have ever been brushed off as it was. But if I did not get that regular testing I would not have such a history to bring to a specialist. Iāve been lucky: disorders related to low ALP are hard to diagnose, often misdiagnosed or ignored for years.
Thankfully I did have the data in hand. So I went to see an endocrinologist, a wonderful compassionate man, who told me that had my levels be that low for one year he would have looked into it, let alone several years. He had me do a lot of blood tests. Seven vials! I never had that many taken at once. Tomorrow I have a bone density test as well, but the first blood test results are trickling in and confirming that, indeed, something IS wrong and the kicker is that all of the symptoms are listed above are triggered by these low levels. So Iām not okay. It wasnāt all me just ānot coping with lifeā or ānot handling getting oldā. Something is wrong. Now we have to figure out exactly what, or more precisely why.
I could have a rare genetic disorder called hypophosphatasia. I could have pernicious anemia. The issues could also be triggered by my epilepsy medication, something Iām crossing my fingers for, since itās one of the fixable possibilities. How I proceed going forward will depend on results of further testing that is being done at this time, at great cost, right as we had a lot of spending due to the cats as well.
I still carry a lot of guilt for how much Iāve made my friends wait for art. But I also wanted to share this information because this year has been so unlike me. Iāve been getting worse in general, last year was also very hard, Iāve been so slow. But this year was something else altogether. And there may actually be a reason for that. So I wanted you guys to know it may not have been entirely a personal failure, although I know that shouldnāt be anyoneās problem but my own, and Iām still deeply sorry for that.
Kind of a tangent here, but as Iāve come to learn more about this, I have wondered if my difficulties in writing alt text have anything to do with how hard thinking feels for me these last couple of years but especially this year. Itās like a heavy lifting exercise for my brain, hard to put into words. If and when this is fixed (thatās the scary part, there is potential of no fix, and of worsening, as well) Iām curious as to whether such things will slowly become a little easier for me.
Iāll have updates for you guys over the next few weeks and I really appreciate everyone reading this. I make a lot of typos these days/not always write clearly so I may have to revise this in a bit. š
Anyway. I should be happy. I have a happy life, and I am so fortunate in so many ways. Iām just really stressed the hell out. Iāve generally chalked it all up to the cats, or rather, to the havoc Romeo has brought upon our household, which, when so many cats are already in the picture, causes problems with all of them. I wonāt get into the details of that right now since Iāve written about it so many times. Even so, it really isnāt the end of the world and it should not be affecting me the way it is. I donāt think it would affect most people this way.
I have art I owe close friends for way too long which I have yet to complete (on that note: right now the couple of Christmas commissions, one for Snow and one for Kenny, and the commission for Wilk, are all on track to be completed on time: I finished several commissions in the last two months but have been too tired to do anything besides send them to the commissioners). My current level of delay would once have been unthinkable for someone with my ethics, and I have chided people, privately and openly, for finding themselves in similar situations. I blamed myself for this, naturally, and continue to do so, even though other circumstances are coming to light now.
All of this year I have not been myself, physically or mentally. I have intense joint and muscle pain, as well as constant tingling in my extremities. Iāve always bruised easily, but this too has gotten worse and longer lasting. My hair, which always fell a little due to my epilepsy medication, is falling much more. Some mild IBS symptoms Iāve had all my life have intensified in the last year. I am always tired, and my hands and feet are always frozen to the touch, even if the rest of me is warm. No amount of socks or blankets help. Sometimes I just start crying randomly, out of the blue, from how tired and stressed I feel. This, as you can imagine, is distressing to my loved ones.
This year I have not read, played video games, blogged, played with my toys, worked on my books or drawn in any significant capacity. My house is dirty, my relationships are neglected. I am always tired, and very sore. It often feels as though I am in a deep brain fog; thinking is difficult. This is the main reason I stopped blogging. Iām sure my friends, online and offline, have noticed that Iāve not been myself. Iāve blamed it all on the stress the cats have caused me, and this is a factor, for sure, but it should have been obvious that it alone would not have caused me to fall apart as I have.
Some of you might remember me mentioning the neuropathy issues way back in 2022 or thereabouts. Tests were done at the time, including one particularly unpleasant one in which small needles were stuck into my muscles and then little electric shocks administered through them. All results showed no apparent issues with me physically. āDrink waterā, doctors told me, or āyouāre just getting olderā.
Iāve had somewhat hypochondriac tendencies since childhood, so Iāve learned to accept such answers and move on with my life. I learned to live with it all: the tingling, the bruising, the cold, the intensifying muscle and joint pain, the feeling of dread in the pit of my stomach when I take a clump of hair off my hairbrush in the mornings or evenings, needing to rush into bathrooms at stores (and sometimes, depending on the time of day, even picking where to shop depending on whether I know a bathroom will be available).
Now, one thing I want to point out is that I get twice-yearly blood tests because of my epilepsy medication. These tests, fortuitously as it will turn out, check for things which other routine tests often do not. For several years Iāve asked different doctors about a specific level in my blood test that was always too low, in the āredā zone: alkaline phosphate, or ALP. I have results since 2017 and not a single one has ever been normal. Multiple doctors, including really good ones that I trusted very much, brushed me off. As it turns out, it is common for doctors to disregard low ALP. Because of the hypochondriac tendencies I mentioned, I thought I knew better than to research more into it. Google is most definitely not a low-key hypochondriacās friend. So I didnāt. Until recently.
It turns out, it is very, very unlikely to ever be āokā for that level to be low in oneās body for years. It could be my baseline, but it would be quite rare, just as many of the disorders (some genetic and incurable) that cause it are very rare. It should not have ever been brushed off as it was. But if I did not get that regular testing I would not have such a history to bring to a specialist. Iāve been lucky: disorders related to low ALP are hard to diagnose, often misdiagnosed or ignored for years.
Thankfully I did have the data in hand. So I went to see an endocrinologist, a wonderful compassionate man, who told me that had my levels be that low for one year he would have looked into it, let alone several years. He had me do a lot of blood tests. Seven vials! I never had that many taken at once. Tomorrow I have a bone density test as well, but the first blood test results are trickling in and confirming that, indeed, something IS wrong and the kicker is that all of the symptoms are listed above are triggered by these low levels. So Iām not okay. It wasnāt all me just ānot coping with lifeā or ānot handling getting oldā. Something is wrong. Now we have to figure out exactly what, or more precisely why.
I could have a rare genetic disorder called hypophosphatasia. I could have pernicious anemia. The issues could also be triggered by my epilepsy medication, something Iām crossing my fingers for, since itās one of the fixable possibilities. How I proceed going forward will depend on results of further testing that is being done at this time, at great cost, right as we had a lot of spending due to the cats as well.
I still carry a lot of guilt for how much Iāve made my friends wait for art. But I also wanted to share this information because this year has been so unlike me. Iāve been getting worse in general, last year was also very hard, Iāve been so slow. But this year was something else altogether. And there may actually be a reason for that. So I wanted you guys to know it may not have been entirely a personal failure, although I know that shouldnāt be anyoneās problem but my own, and Iām still deeply sorry for that.
Kind of a tangent here, but as Iāve come to learn more about this, I have wondered if my difficulties in writing alt text have anything to do with how hard thinking feels for me these last couple of years but especially this year. Itās like a heavy lifting exercise for my brain, hard to put into words. If and when this is fixed (thatās the scary part, there is potential of no fix, and of worsening, as well) Iām curious as to whether such things will slowly become a little easier for me.
Iāll have updates for you guys over the next few weeks and I really appreciate everyone reading this. I make a lot of typos these days/not always write clearly so I may have to revise this in a bit. š
Wow! You read the whole thing. Have another cookie! 
š Need to contact me about an important or time sensitive matter? Please email me at marina[at]marinaneira.com or reach out on Telegram at https://t.me/squelfland.
"We are what we pretend to be, so we must be careful about what we pretend to be. Cruelty in jest is still cruelty. Bigotry as irony is still bigotry. Do not pretend to be that which you do not want to be." 
Not knowing, having all of the symptoms, dealing with those, dealing with the stress of being too exhausted/sore to do things, then being more stressed because you can't do things you have promised other people...just...oof.