Happy Birthday, Lunar Kreskents!

[Jon]

@Lunar Kreskents

May your day be fun and eventful!

Or peaceful and quiet if you prefer!

 

[shortkut]

Happy birthday Toni! Hope you’re doing well!

 

[Nae'blis]

Happy birthday! May the cornucopia of Reese's be ever overflowing!

 

[Crystal]

Yay! Happy Birthday, Toni! Hope you have an incredible day!

 

[Mark]

Happy birthday, Toni. I hope you’re having a good one noping around today.

 

[Ben]

Happy birthday, Toni! May your birthday be poi-fect.

 

[Disgustipated]

Happy Birthday Toni! Hope it's a great one!

 

[A Slightly New Used Server]

Yeah happy birthday. You should watch the marching band DVD I sent you 20 years ago to celebrate.

Or not. Either way is good.

 

[dimmerwit]

 

[Ben]

I almost posted a portrait I drew of you on Feb 13th 2004 as a gift, but then got cringe over my early bad art, so didn't.

But the sentiment of "20 years is a long time" was the main thing I was going for.

 

[dimmerwit]

I almost posted a portrait I drew of you on Feb 13th 2004 as a gift, but then got cringe over my early bad art, so didn't.

You can't just reveal the existence of a 20 year old masterpiece and not post it!

 

[Nae'blis]

 

[Lunar Kreskents]

Aw thanks guys

I will accept your 20 year old masterpiece, I'm sure it will provide some much needed giggles.

Wish I were able to post here more often, but I'm watching I'm too tired to type a new life update, so here's the one I shared on Facebook.

Day 13,140: I asked ChatGPT to draw what it thinks my life currently looks like vs what it actually looks like.


I sleep on an air mattress. I have a small rolled up double pillowcased throw blanket as a pillow. A real pillow is too hard to clean. I can't have anything plush, like a pillow or a mattress because even small amounts of allergen leave me either trapped in the bed unconscious or gasping unable to sleep and bizarre jerking eyes. I have to wash everything on the bed and rotate the blankets every 1-2 days. I used dust barriers and built a magnetic door to create as close to an airlocked space in the basement as possible. I leave the airlock as little as possible. I get weak when I'm upstairs for too long. It takes an hour to take a shower because I can't get out. I can't have anything soft or porous because everything absorbs allergen and has to be meticulously cleaned. I can't have wood or paper because it's too difficult to clean. Everything needs to be stored in an airtight container because it takes too long to clean. I clean everything I come into contact with weekly or try to make it a second week if I can and that causes problems. I'm developing cleaning trauma. I have to clean everything I own in vinegar daily/weekly. I feel like I'm going to die if I have to clean one more thing, but it takes all my free time cleaning to keep it clean enough to keep working. I can't afford not to work. I rely heavily on my ability to anticipate to keep working, preparing everything ahead of time because I never know when I won't be able to see and therefore won't be able to participate. Some days my hands hurt too much to type. Every day I struggle to keep my eyes straight or open. I have to ration my hand and eye motions. It's loud because I can't have anything soft and I have to have an air purifier running by me at all times. I just had to replace the $300 purifier filters again. I have 4 purifiers. Everything is too loud all the time, and even quiet noises make my eyeballs jerk if it's sudden. The eyeball jerks wake me up. If I want to use over ear noise cancelling headphones, I have to vacuum the cushion out multiple times a day. Same thing with my construction earmuffs. I've gotten some kind of ear infection and have lost substantial hearing in one ear, so I'm trying not to use the in ear headphones and the earplugs as little as possible. I change the HVAC filter with a new carbon air filter every 3 days or allergen starts to pour out, in part because the entire unfinished part of the basement where the HVAC is is porous material that cannot be cleaned. The filters cost ~$18 each. I tried a cheaper filter. I timed it. It lasted less than 10 minutes before it was saturated. I'm going to go broke on air filters alone. My eyes vibrate every time I breathe in allergen, from the ambient air, from my clothes, from my hair, from the skin around my nose. I wipe the allergen from my face multiple times a day with baby wipes or face wash, which helps for a little while, depending on how contaminated my clothes or hair is. I'm constantly scrambling between tasks because every time this happens I can't see in detail. I vanquished the suddenly falling asleep by removing foods and allergen, but now I'm trying to add them back in with mixed to poor results because the vibrating eyes and feeling like jello is increasingly unbearable. Certain foods or medications + allergen exposure = fainting or falling asleep. Somehow I can sleep 14 hours and still wake up sleep deprived. I slept 17 hours without waking from Novavax. I tried to reduce some of the fatigue from strabismus by wearing readers, but allergen builds up on the lens after ~60 seconds so I have to take them off over and over to wipe them down. I feel like I have sand in my eyes and on my lips all the time. I've gone from sweating all the time to being cold all the time. The removed foods and allergen caused "hot flashes". I used to wake up drenched in sweat, it was a common complaint. I can't easily wear warm clothes because are too plush making them big allergen sponges and I can't turn up the heat because it causes allergen to off gas objects faster so it needs to stay cold enough in the room. I can't buy a heating pad because I can't wash it in vinegar. I bought a hot water bottle but every time I leave the airlock there is a toll. I can't sleep without Chii keeping my feet warm at night. Chii is diligent about her job. I change my clothes multiple times a day because they get too contaminated. My hair is an allergen sponge so I wear a bonnet over it. I tried cutting my hair but somehow it just made it more poofy and therefore easier to capture allergen. I thought about shaving my head, but then I will just have exposed skin for the allergen to land on instead. I can barely wear warm clothes, so I don't see how wearing a hat on my head near my eyes will help. Outside is not safe, because anywhere people are smoking weed it's a problem. Even sitting on my doorstep the smell of someone smoking will waft over and then I can't see and can't work. I'm finding through Reddit developing an allergy to weed seems not actually all that uncommon, and with more people smoking all the time, I think we're in for an onslaught of autoimmune disease that will come as a surprise to everyone when it doesn't have to. Cigarettes were once doctor approved too, and we see how that ended. The weed allergen is by far the most potent trigger, but there are many. I'm sensitive to random flowers outside and have to stop multiple times getting woozy to go for a walk. I have to lay down for 30+ min after or I'm stumbling around like a drunk. I'm intolerant to random foods and spices. Simple supplements like vitamin D. Random fragrances. Random hotel rooms. The residue from random Amazon packages. The smell of wall paint. Things with bacteria like fermented food or a nasty sponge. No where is safe. I partially wonder if it's so bad because I've mostly stopped drinking any alcohol because I stopped going out. Not drinking should be good for you, but it's the only thing I've found that seems to substantially reduce the symptoms and allow for some relatively normal time for awhile. I think I'm going to take up drinking again. Some studies show moderate alcohol consumption reduces the incidence of certain autoimmune disorders like Graves' disease or rheumatoid arthritis, theoretically because it suppresses the immune system. I often wonder what's worse for your body, long term alcohol consumption or long term prednisone use.

Life is not precious. Quality of life is. Having to live in an airlock is not precious. Long covid is not precious. Another Trump presidency is not precious. So on and so forth. What ratio of quality of life versus un-quality of life should be acceptable? I'm not sure, but I can definitely say there are things worse than death. I can't imagine living like this for another 40, 50, 60 years. I hope there will be an end soon.

Live while you can friends.

 

[Ben]

Aw thanks guys

I will accept your 20 year old masterpiece, I'm sure it will provide some much needed giggles.

Wish I were able to post here more often, but I'm watching I'm too tired to type a new life update, so here's the one I shared on Facebook.

Day 13,140: I asked ChatGPT to draw what it thinks my life currently looks like vs what it actually looks like.
View attachment 22504View attachment 22506

I sleep on an air mattress. I have a small rolled up double pillowcased throw blanket as a pillow. A real pillow is too hard to clean. I can't have anything plush, like a pillow or a mattress because even small amounts of allergen leave me either trapped in the bed unconscious or gasping unable to sleep and bizarre jerking eyes. I have to wash everything on the bed and rotate the blankets every 1-2 days. I used dust barriers and built a magnetic door to create as close to an airlocked space in the basement as possible. I leave the airlock as little as possible. I get weak when I'm upstairs for too long. It takes an hour to take a shower because I can't get out. I can't have anything soft or porous because everything absorbs allergen and has to be meticulously cleaned. I can't have wood or paper because it's too difficult to clean. Everything needs to be stored in an airtight container because it takes too long to clean. I clean everything I come into contact with weekly or try to make it a second week if I can and that causes problems. I'm developing cleaning trauma. I have to clean everything I own in vinegar daily/weekly. I feel like I'm going to die if I have to clean one more thing, but it takes all my free time cleaning to keep it clean enough to keep working. I can't afford not to work. I rely heavily on my ability to anticipate to keep working, preparing everything ahead of time because I never know when I won't be able to see and therefore won't be able to participate. Some days my hands hurt too much to type. Every day I struggle to keep my eyes straight or open. I have to ration my hand and eye motions. It's loud because I can't have anything soft and I have to have an air purifier running by me at all times. I just had to replace the $300 purifier filters again. I have 4 purifiers. Everything is too loud all the time, and even quiet noises make my eyeballs jerk if it's sudden. The eyeball jerks wake me up. If I want to use over ear noise cancelling headphones, I have to vacuum the cushion out multiple times a day. Same thing with my construction earmuffs. I've gotten some kind of ear infection and have lost substantial hearing in one ear, so I'm trying not to use the in ear headphones and the earplugs as little as possible. I change the HVAC filter with a new carbon air filter every 3 days or allergen starts to pour out, in part because the entire unfinished part of the basement where the HVAC is is porous material that cannot be cleaned. The filters cost ~$18 each. I tried a cheaper filter. I timed it. It lasted less than 10 minutes before it was saturated. I'm going to go broke on air filters alone. My eyes vibrate every time I breathe in allergen, from the ambient air, from my clothes, from my hair, from the skin around my nose. I wipe the allergen from my face multiple times a day with baby wipes or face wash, which helps for a little while, depending on how contaminated my clothes or hair is. I'm constantly scrambling between tasks because every time this happens I can't see in detail. I vanquished the suddenly falling asleep by removing foods and allergen, but now I'm trying to add them back in with mixed to poor results because the vibrating eyes and feeling like jello is increasingly unbearable. Certain foods or medications + allergen exposure = fainting or falling asleep. Somehow I can sleep 14 hours and still wake up sleep deprived. I slept 17 hours without waking from Novavax. I tried to reduce some of the fatigue from strabismus by wearing readers, but allergen builds up on the lens after ~60 seconds so I have to take them off over and over to wipe them down. I feel like I have sand in my eyes and on my lips all the time. I've gone from sweating all the time to being cold all the time. The removed foods and allergen caused "hot flashes". I used to wake up drenched in sweat, it was a common complaint. I can't easily wear warm clothes because are too plush making them big allergen sponges and I can't turn up the heat because it causes allergen to off gas objects faster so it needs to stay cold enough in the room. I can't buy a heating pad because I can't wash it in vinegar. I bought a hot water bottle but every time I leave the airlock there is a toll. I can't sleep without Chii keeping my feet warm at night. Chii is diligent about her job. I change my clothes multiple times a day because they get too contaminated. My hair is an allergen sponge so I wear a bonnet over it. I tried cutting my hair but somehow it just made it more poofy and therefore easier to capture allergen. I thought about shaving my head, but then I will just have exposed skin for the allergen to land on instead. I can barely wear warm clothes, so I don't see how wearing a hat on my head near my eyes will help. Outside is not safe, because anywhere people are smoking weed it's a problem. Even sitting on my doorstep the smell of someone smoking will waft over and then I can't see and can't work. I'm finding through Reddit developing an allergy to weed seems not actually all that uncommon, and with more people smoking all the time, I think we're in for an onslaught of autoimmune disease that will come as a surprise to everyone when it doesn't have to. Cigarettes were once doctor approved too, and we see how that ended. The weed allergen is by far the most potent trigger, but there are many. I'm sensitive to random flowers outside and have to stop multiple times getting woozy to go for a walk. I have to lay down for 30+ min after or I'm stumbling around like a drunk. I'm intolerant to random foods and spices. Simple supplements like vitamin D. Random fragrances. Random hotel rooms. The residue from random Amazon packages. The smell of wall paint. Things with bacteria like fermented food or a nasty sponge. No where is safe. I partially wonder if it's so bad because I've mostly stopped drinking any alcohol because I stopped going out. Not drinking should be good for you, but it's the only thing I've found that seems to substantially reduce the symptoms and allow for some relatively normal time for awhile. I think I'm going to take up drinking again. Some studies show moderate alcohol consumption reduces the incidence of certain autoimmune disorders like Graves' disease or rheumatoid arthritis, theoretically because it suppresses the immune system. I often wonder what's worse for your body, long term alcohol consumption or long term prednisone use.

Life is not precious. Quality of life is. Having to live in an airlock is not precious. Long covid is not precious. Another Trump presidency is not precious. So on and so forth. What ratio of quality of life versus un-quality of life should be acceptable? I'm not sure, but I can definitely say there are things worse than death. I can't imagine living like this for another 40, 50, 60 years. I hope there will be an end soon.

Live while you can friends.

First, damn. I can only imagine how difficult that makes everything and sympathize. Considering all of that, I don't think anyone would fault you for drinking some, especially if it does lessen the symptoms. I'd never encourage you to go off the deep end in that regard, though. My main thought would be around interaction with any medications you're taking, but that's more a @shortkut question.

Second, I can't continue to complain after that, so here's the picture(s);

 

[Lunar Kreskents]

First, damn. I can only imagine how difficult that makes everything and sympathize. Considering all of that, I don't think anyone would fault you for drinking some, especially if it does lessen the symptoms. I'd never encourage you to go off the deep end in that regard, though. My main thought would be around interaction with any medications you're taking, but that's more a @shortkut question.

Second, I can't continue to complain after that, so here's the picture(s);

View attachment 22507View attachment 22508

I've historically had strict rules around not drinking too much given 2 of my uncles literally drank themselves to death. When the first one died, the other showed up with a 6 pack to put in the casket lol, may they rest in peace. That said, I had no craving issue whatsoever with hardly consuming alcohol at all over the last year, so I'm pretty sure I did not inherit whatever gene makes someone uncontrollably crave alcohol. I do have to wonder if they kept drinking because it eased some other medical symptom like mine, but they were so crazy all the time, no one would ever know.

I remember that drawing well! It's pretty good actually. I present to you the far more embarrassing actual photo I think that was probably based on

 

[Benzine]

happpy birthday

 

[Ben]

I've historically had strict rules around not drinking too much given 2 of my uncles literally drank themselves to death. When the first one died, the other showed up with a 6 pack to put in the casket lol, may they rest in peace. That said, I had no craving issue whatsoever with hardly consuming alcohol at all over the last year, so I'm pretty sure I did not inherit whatever gene makes someone uncontrollably crave alcohol. I do have to wonder if they kept drinking because it eased some other medical symptom like mine, but they were so crazy all the time, no one would ever know.

I remember that drawing well! It's pretty good actually. I present to you the far more embarrassing actual photo I think that was probably based on
View attachment 22511 View attachment 22512

Definitely remember that one, so I'd say so! Such a 2000s angle.

 

[shortkut]

Aw thanks guys

I will accept your 20 year old masterpiece, I'm sure it will provide some much needed giggles.

Wish I were able to post here more often, but I'm watching I'm too tired to type a new life update, so here's the one I shared on Facebook.

Day 13,140: I asked ChatGPT to draw what it thinks my life currently looks like vs what it actually looks like.
View attachment 22504View attachment 22506

I sleep on an air mattress. I have a small rolled up double pillowcased throw blanket as a pillow. A real pillow is too hard to clean. I can't have anything plush, like a pillow or a mattress because even small amounts of allergen leave me either trapped in the bed unconscious or gasping unable to sleep and bizarre jerking eyes. I have to wash everything on the bed and rotate the blankets every 1-2 days. I used dust barriers and built a magnetic door to create as close to an airlocked space in the basement as possible. I leave the airlock as little as possible. I get weak when I'm upstairs for too long. It takes an hour to take a shower because I can't get out. I can't have anything soft or porous because everything absorbs allergen and has to be meticulously cleaned. I can't have wood or paper because it's too difficult to clean. Everything needs to be stored in an airtight container because it takes too long to clean. I clean everything I come into contact with weekly or try to make it a second week if I can and that causes problems. I'm developing cleaning trauma. I have to clean everything I own in vinegar daily/weekly. I feel like I'm going to die if I have to clean one more thing, but it takes all my free time cleaning to keep it clean enough to keep working. I can't afford not to work. I rely heavily on my ability to anticipate to keep working, preparing everything ahead of time because I never know when I won't be able to see and therefore won't be able to participate. Some days my hands hurt too much to type. Every day I struggle to keep my eyes straight or open. I have to ration my hand and eye motions. It's loud because I can't have anything soft and I have to have an air purifier running by me at all times. I just had to replace the $300 purifier filters again. I have 4 purifiers. Everything is too loud all the time, and even quiet noises make my eyeballs jerk if it's sudden. The eyeball jerks wake me up. If I want to use over ear noise cancelling headphones, I have to vacuum the cushion out multiple times a day. Same thing with my construction earmuffs. I've gotten some kind of ear infection and have lost substantial hearing in one ear, so I'm trying not to use the in ear headphones and the earplugs as little as possible. I change the HVAC filter with a new carbon air filter every 3 days or allergen starts to pour out, in part because the entire unfinished part of the basement where the HVAC is is porous material that cannot be cleaned. The filters cost ~$18 each. I tried a cheaper filter. I timed it. It lasted less than 10 minutes before it was saturated. I'm going to go broke on air filters alone. My eyes vibrate every time I breathe in allergen, from the ambient air, from my clothes, from my hair, from the skin around my nose. I wipe the allergen from my face multiple times a day with baby wipes or face wash, which helps for a little while, depending on how contaminated my clothes or hair is. I'm constantly scrambling between tasks because every time this happens I can't see in detail. I vanquished the suddenly falling asleep by removing foods and allergen, but now I'm trying to add them back in with mixed to poor results because the vibrating eyes and feeling like jello is increasingly unbearable. Certain foods or medications + allergen exposure = fainting or falling asleep. Somehow I can sleep 14 hours and still wake up sleep deprived. I slept 17 hours without waking from Novavax. I tried to reduce some of the fatigue from strabismus by wearing readers, but allergen builds up on the lens after ~60 seconds so I have to take them off over and over to wipe them down. I feel like I have sand in my eyes and on my lips all the time. I've gone from sweating all the time to being cold all the time. The removed foods and allergen caused "hot flashes". I used to wake up drenched in sweat, it was a common complaint. I can't easily wear warm clothes because are too plush making them big allergen sponges and I can't turn up the heat because it causes allergen to off gas objects faster so it needs to stay cold enough in the room. I can't buy a heating pad because I can't wash it in vinegar. I bought a hot water bottle but every time I leave the airlock there is a toll. I can't sleep without Chii keeping my feet warm at night. Chii is diligent about her job. I change my clothes multiple times a day because they get too contaminated. My hair is an allergen sponge so I wear a bonnet over it. I tried cutting my hair but somehow it just made it more poofy and therefore easier to capture allergen. I thought about shaving my head, but then I will just have exposed skin for the allergen to land on instead. I can barely wear warm clothes, so I don't see how wearing a hat on my head near my eyes will help. Outside is not safe, because anywhere people are smoking weed it's a problem. Even sitting on my doorstep the smell of someone smoking will waft over and then I can't see and can't work. I'm finding through Reddit developing an allergy to weed seems not actually all that uncommon, and with more people smoking all the time, I think we're in for an onslaught of autoimmune disease that will come as a surprise to everyone when it doesn't have to. Cigarettes were once doctor approved too, and we see how that ended. The weed allergen is by far the most potent trigger, but there are many. I'm sensitive to random flowers outside and have to stop multiple times getting woozy to go for a walk. I have to lay down for 30+ min after or I'm stumbling around like a drunk. I'm intolerant to random foods and spices. Simple supplements like vitamin D. Random fragrances. Random hotel rooms. The residue from random Amazon packages. The smell of wall paint. Things with bacteria like fermented food or a nasty sponge. No where is safe. I partially wonder if it's so bad because I've mostly stopped drinking any alcohol because I stopped going out. Not drinking should be good for you, but it's the only thing I've found that seems to substantially reduce the symptoms and allow for some relatively normal time for awhile. I think I'm going to take up drinking again. Some studies show moderate alcohol consumption reduces the incidence of certain autoimmune disorders like Graves' disease or rheumatoid arthritis, theoretically because it suppresses the immune system. I often wonder what's worse for your body, long term alcohol consumption or long term prednisone use.

Life is not precious. Quality of life is. Having to live in an airlock is not precious. Long covid is not precious. Another Trump presidency is not precious. So on and so forth. What ratio of quality of life versus un-quality of life should be acceptable? I'm not sure, but I can definitely say there are things worse than death. I can't imagine living like this for another 40, 50, 60 years. I hope there will be an end soon.

Live while you can friends.

I’m sorry to hear how stressful everything is. I remember when you mentioned you started having the reactions due to your housemate smoking. Is this all stemming from that?

If there’s any medication you have questions on, I do have resources that might be able to help me answer your questions

 

[Lunar Kreskents]

I’m sorry to hear how stressful everything is. I remember when you mentioned you started having the reactions due to your housemate smoking. Is this all stemming from that?

If there’s any medication you have questions on, I do have resources that might be able to help me answer your questions

TLDR Life History: Mysterious medical issues for as long as I can remember. Got significantly worse after living with weed smokers multiple times over the years, but the connection was not at all obvious. Finally had a severe allergic reaction to my last roommate's putrid smelling weed which made the connection obvious. Symptoms overall got way worse. Moved and tried to clean my stuff. New place and all my partners stuff got cross contaminated as a result, so now I'm allergic to my home, again, in addition to a whole host of things I was probably only mildly intolerant to before. Antihistamines did nothing for the muscular or eye symptoms. Tested positive for ACHR blocking antibodies. Eye doctor says if I tested positive for antibodies, then myasthenia gravis is what's wrong with my eyes. First line treatment pyridostigmine bromide for myasthenia gravis made symptoms dramatically worse. Neurologist got scared to do anything further and declined to try a CT scan or immunosuppressants. MG community says WI is useless for MG treatment and that I'd need to go out of state to an institution with a more modern understanding of the disease. I have no clue how anyone can afford such a thing, so I'm on my own until until further notice. Alcohol, even in very small doses, seems to be the only thing I have access to that generally suppresses the symptoms with no side effects, and given how many prednisone "I wish I had never started it" horror stories I've read at this point, maybe that's the best course.

Alas, there's nothing anyone can do.

 

[shortkut]

TLDR Life History: Mysterious medical issues for as long as I can remember. Got significantly worse after living with weed smokers multiple times over the years, but the connection was not at all obvious. Finally had a severe allergic reaction to my last roommate's putrid smelling weed which made the connection obvious. Symptoms overall got way worse. Moved and tried to clean my stuff. New place and all my partners stuff got cross contaminated as a result, so now I'm allergic to my home, again, in addition to a whole host of things I was probably only mildly intolerant to before. Antihistamines did nothing for the muscular or eye symptoms. Tested positive for ACHR blocking antibodies. Eye doctor says if I tested positive for antibodies, then myasthenia gravis is what's wrong with my eyes. First line treatment pyridostigmine bromide for myasthenia gravis made symptoms dramatically worse. Neurologist got scared to do anything further and declined to try a CT scan or immunosuppressants. MG community says WI is useless for MG treatment and that I'd need to go out of state to an institution with a more modern understanding of the disease. I have no clue how anyone can afford such a thing, so I'm on my own until until further notice. Alcohol, even in very small doses, seems to be the only thing I have access to that generally suppresses the symptoms with no side effects, and given how many prednisone "I wish I had never started it" horror stories I've read at this point, maybe that's the best course.

Alas, there's nothing anyone can do.

My company treats some MG patients with IVIG. Essentially, the IVIg works by altering your immune system and neutralizing or destroying damaging antibodies. Usually, this is used for patients with severe or rapidly worsening symptoms of MG. It sounds like you fit this criteria. We can take medical questions out of this thread if you prefer.

 

[Ben]

My company treats some MG patients with IVIG. Essentially, the IVIg works by altering your immune system and neutralizing or destroying damaging antibodies. Usually, this is used for patients with severe or rapidly worsening symptoms of MG. It sounds like you fit this criteria. We can take medical questions out of this thread if you prefer.

Yeah, I said just "myasthenia gravis" outloud and my wife said "myasthenia gravis? I treat patients with that all the time."

I dunno what IVIG is available in WI, but definitely check that.

 

[shortkut]

My company ships it if insurance covers infusions at home. I’m pretty sure we have locations in Wisconsin. IVIG can be obtained at most hospital related infusion centers as well

 

[Lunar Kreskents]

My company treats some MG patients with IVIG. Essentially, the IVIg works by altering your immune system and neutralizing or destroying damaging antibodies. Usually, this is used for patients with severe or rapidly worsening symptoms of MG. It sounds like you fit this criteria. We can take medical questions out of this thread if you prefer.

While there seems to be a wide range of immunotherapies to try, as far as I can tell from my insurance documents, they won't approve any other immunotherapy without failing 6 months of prednisone first. Not that I can access that either, after the pyridostigmine bromide did not work and the SFEMG was normal, the neurologist decided to just throw out the positive blood test saying she could not help me. I'm pretty sure I could beg for more opinions, find more neurologists, and eventually convince someone to try prednisone, but from research it seems like the side effects are just as bad as the disease. From the communities, it sounds like IVIG is only approved if you are in the ER for a myasthenic crisis, or if you fail a lengthy list of other immunotherapies.

 

[shortkut]

While there seems to be a wide range of immunotherapies to try, as far as I can tell from my insurance documents, they won't approve any other immunotherapy without failing 6 months of prednisone first. Not that I can access that either, after the pyridostigmine bromide did not work and the SFEMG was normal, the neurologist decided to just throw out the positive blood test saying she could not help me. I'm pretty sure I could beg for more opinions, find more neurologists, and eventually convince someone to try prednisone, but from research it seems like the side effects are just as bad as the disease. From the communities, it sounds like IVIG is only approved if you are in the ER for a myasthenic crisis, or if you fail a lengthy list of other immunotherapies.

Are you still 3-4 hours from the Mayo Clinic? I would think they would have an MG specialist. If you would be classified as severe, the MD might be able to help get authorization by performing a peer2peer with the insurance company and skip some of the steps. I hate insurance companies and the delays they cause most of my patients

 

[Lunar Kreskents]

Are you still 3-4 hours from the Mayo Clinic? I would think they would have an MG specialist. If you would be classified as severe, the MD might be able to help get authorization by performing a peer2peer with the insurance company and skip some of the steps. I hate insurance companies and the delays they cause most of my patients

I was told recently it costs $5,000 to be seen by Mayo, which seems like a lot to spend on the basis of hope after I've blown my entire savings getting tested for everything from POTS to narcolepsy.. It would be helpful to know who or where or how to find ways to bypass insurance hurdles the next time I have a pile of money though.

 

[shortkut]

I was told recently it costs $5,000 to be seen by Mayo, which seems like a lot to spend on the basis of hope after I've blown my entire savings getting tested for everything from POTS to narcolepsy.. It would be helpful to know who or where or how to find ways to bypass insurance hurdles the next time I have a pile of money though.

I’ll reach out through the grapevine and see if any of my contacts have contacts in your area for a neurologist in your area

 

[Lunar Kreskents]

I’ll reach out through the grapevine and see if any of my contacts have contacts in your area for a neurologist in your area

That'd be helpful, thank you!

 

[Fool's Requiem]

Aw thanks guys

I will accept your 20 year old masterpiece, I'm sure it will provide some much needed giggles.

Wish I were able to post here more often, but I'm watching I'm too tired to type a new life update, so here's the one I shared on Facebook.

Day 13,140: I asked ChatGPT to draw what it thinks my life currently looks like vs what it actually looks like.
View attachment 22504View attachment 22506

I sleep on an air mattress. I have a small rolled up double pillowcased throw blanket as a pillow. A real pillow is too hard to clean. I can't have anything plush, like a pillow or a mattress because even small amounts of allergen leave me either trapped in the bed unconscious or gasping unable to sleep and bizarre jerking eyes. I have to wash everything on the bed and rotate the blankets every 1-2 days. I used dust barriers and built a magnetic door to create as close to an airlocked space in the basement as possible. I leave the airlock as little as possible. I get weak when I'm upstairs for too long. It takes an hour to take a shower because I can't get out. I can't have anything soft or porous because everything absorbs allergen and has to be meticulously cleaned. I can't have wood or paper because it's too difficult to clean. Everything needs to be stored in an airtight container because it takes too long to clean. I clean everything I come into contact with weekly or try to make it a second week if I can and that causes problems. I'm developing cleaning trauma. I have to clean everything I own in vinegar daily/weekly. I feel like I'm going to die if I have to clean one more thing, but it takes all my free time cleaning to keep it clean enough to keep working. I can't afford not to work. I rely heavily on my ability to anticipate to keep working, preparing everything ahead of time because I never know when I won't be able to see and therefore won't be able to participate. Some days my hands hurt too much to type. Every day I struggle to keep my eyes straight or open. I have to ration my hand and eye motions. It's loud because I can't have anything soft and I have to have an air purifier running by me at all times. I just had to replace the $300 purifier filters again. I have 4 purifiers. Everything is too loud all the time, and even quiet noises make my eyeballs jerk if it's sudden. The eyeball jerks wake me up. If I want to use over ear noise cancelling headphones, I have to vacuum the cushion out multiple times a day. Same thing with my construction earmuffs. I've gotten some kind of ear infection and have lost substantial hearing in one ear, so I'm trying not to use the in ear headphones and the earplugs as little as possible. I change the HVAC filter with a new carbon air filter every 3 days or allergen starts to pour out, in part because the entire unfinished part of the basement where the HVAC is is porous material that cannot be cleaned. The filters cost ~$18 each. I tried a cheaper filter. I timed it. It lasted less than 10 minutes before it was saturated. I'm going to go broke on air filters alone. My eyes vibrate every time I breathe in allergen, from the ambient air, from my clothes, from my hair, from the skin around my nose. I wipe the allergen from my face multiple times a day with baby wipes or face wash, which helps for a little while, depending on how contaminated my clothes or hair is. I'm constantly scrambling between tasks because every time this happens I can't see in detail. I vanquished the suddenly falling asleep by removing foods and allergen, but now I'm trying to add them back in with mixed to poor results because the vibrating eyes and feeling like jello is increasingly unbearable. Certain foods or medications + allergen exposure = fainting or falling asleep. Somehow I can sleep 14 hours and still wake up sleep deprived. I slept 17 hours without waking from Novavax. I tried to reduce some of the fatigue from strabismus by wearing readers, but allergen builds up on the lens after ~60 seconds so I have to take them off over and over to wipe them down. I feel like I have sand in my eyes and on my lips all the time. I've gone from sweating all the time to being cold all the time. The removed foods and allergen caused "hot flashes". I used to wake up drenched in sweat, it was a common complaint. I can't easily wear warm clothes because are too plush making them big allergen sponges and I can't turn up the heat because it causes allergen to off gas objects faster so it needs to stay cold enough in the room. I can't buy a heating pad because I can't wash it in vinegar. I bought a hot water bottle but every time I leave the airlock there is a toll. I can't sleep without Chii keeping my feet warm at night. Chii is diligent about her job. I change my clothes multiple times a day because they get too contaminated. My hair is an allergen sponge so I wear a bonnet over it. I tried cutting my hair but somehow it just made it more poofy and therefore easier to capture allergen. I thought about shaving my head, but then I will just have exposed skin for the allergen to land on instead. I can barely wear warm clothes, so I don't see how wearing a hat on my head near my eyes will help. Outside is not safe, because anywhere people are smoking weed it's a problem. Even sitting on my doorstep the smell of someone smoking will waft over and then I can't see and can't work. I'm finding through Reddit developing an allergy to weed seems not actually all that uncommon, and with more people smoking all the time, I think we're in for an onslaught of autoimmune disease that will come as a surprise to everyone when it doesn't have to. Cigarettes were once doctor approved too, and we see how that ended. The weed allergen is by far the most potent trigger, but there are many. I'm sensitive to random flowers outside and have to stop multiple times getting woozy to go for a walk. I have to lay down for 30+ min after or I'm stumbling around like a drunk. I'm intolerant to random foods and spices. Simple supplements like vitamin D. Random fragrances. Random hotel rooms. The residue from random Amazon packages. The smell of wall paint. Things with bacteria like fermented food or a nasty sponge. No where is safe. I partially wonder if it's so bad because I've mostly stopped drinking any alcohol because I stopped going out. Not drinking should be good for you, but it's the only thing I've found that seems to substantially reduce the symptoms and allow for some relatively normal time for awhile. I think I'm going to take up drinking again. Some studies show moderate alcohol consumption reduces the incidence of certain autoimmune disorders like Graves' disease or rheumatoid arthritis, theoretically because it suppresses the immune system. I often wonder what's worse for your body, long term alcohol consumption or long term prednisone use.

Life is not precious. Quality of life is. Having to live in an airlock is not precious. Long covid is not precious. Another Trump presidency is not precious. So on and so forth. What ratio of quality of life versus un-quality of life should be acceptable? I'm not sure, but I can definitely say there are things worse than death. I can't imagine living like this for another 40, 50, 60 years. I hope there will be an end soon.

Live while you can friends.

wow, just wow. I hope you can figure this out and get some actual relief. That sounds like actual hell, and I'm sorry you have to go through that.

 

[Lunar Kreskents]

wow, just wow. I hope you can figure this out and get some actual relief. That sounds like actual hell, and I'm sorry you have to go through that.

Thank you for the kind thoughts It truly is actual hell.

On the plus side, here's a cute vid of Chii going through the magnetic door. I'm glad I could build something even she could use. Though I am a little scared every time she runs through with the zoomies at 25 MPH she's going to break her neck. She has such faith in that door and her leg-eye coordination.