#alscaregiving

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Yesterday’s breakfast. #omelette #icanputitdowninthekitchen #icookformywife #pullingmyownweight #ourlifeinjapan #alscaregiving #alsicebucketchallengefail #stillnocure #shiga #japan #imisslosangeles (at Wanitakashiro, Otsu-shi) https://www.instagram.com/p/B-JHjATJrm7/?igshid=n6r0az4uqtga

[akabrat]

So much has happened over the past few days! I first have to say don’t ever be afraid to advocate or speak up! I know at times it can be frustrating. I have been worried about the severity of my lichen planus over the past few months. I’ve also been concerned that each dermatologist has said it’s a severe case. I finally decided to do what I have learned as an advocate to do some research, check the rare disease pages, and follow up on links. I also reached out to share my story on social media with other people who might be able to understand my situation. Lastly, I contacted a clinical trial and after emailing back & forth as I got a surprising answer. It was the clinical trial who took an active interest in my case and shared my concern. Next week I have that appointment! It’s definitely worth speaking up & doing your research. Next I am now part of NORD! I love being a voice, an advocate and being part of the change. Rare disease isn’t easy but making sure those who don’t have a voice are heard is important. I love being part of these wonderful organizations like IDF community and NORD. Volunteering my time makes me feel so good and gives me something to do with people who understand when I can’t that I can’t and will do when I’m able to pick up. They understand the zebra in me. advocacy work is so important to help get these changes that need to be made and I wish I had stepped up prior to having these rare diseases. Lastly super happy to say my senior dog is coming up on his 2 week check up after his emergency visit and been living up life! #daretoberare #makeachange #bethechange #spooniestrong #mycvidlife #cvid #cvidlife #sjogrens #lichenplanus #clinicaltrials #supportresearch #raredisease #bestrong #supportoneanother #raredisease #zebra #zebrawarrior #beavoice #alscaregiver https://www.instagram.com/p/B46mQ4NgKLQ/?igshid=wshqwzgyfwka

[bearrepublicnetwork]

Right now everything is in storage in Los Angeles whilst we take care of お母さん here in Japan, so unfortunately our Etsy store is shut down. But we still have these, so be sure to keep following so you can get yours when we get home. ALS caregiving is rough, though. So we’re not too sure when we can return. Just keep following and I’ll be sure to post more often. #hotdogandbunmedia #hotdogandbun #hotdogandbundotcom #followusformore #keepfollowing #bearrepublicnetwork #thebearrepublicbyhotdogandbun #angelinoinshiga #losangelestojapan #husbandandwifeteam #originalartworkart #originaldesigns #hotdogandbunoriginal #shigaken #shiga #shigajapan #wanitakashiro #shigaprefecture #shigaprefecturejapan #alscaregiving (at Otsu, Shiga) https://www.instagram.com/p/Byy18TegJz9/?igshid=1o2dilj1xc2rg

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Finally alone, and DETERMINED to learn this song. It’s a classic. We have this nice old piano but I rarely get to play it or practice. #doiknowwhatimdoing #shigaprefecture #aloneatlast #missmydigitalpiano #stillneedmorepractice #needlessons #needpianolessons #shigaken #shigajapan #otsushi #otsushiga #rainydaybear #mrssandlittleb #beariswithmom #alscaregiving #hardtimesmakestrongpeople #pianomoments (at Otsu, Shiga) https://www.instagram.com/p/Bx_S5xppJ1X/?igshid=17mai47u5u3co

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Check out this food pantry! Just kidding, that ain’t no damn pantry. It’s just another drop in the bucket on Hoarders Season 20. #ocdawareness #ocdshopping #compulsiveshopper #compulsiveshopping #buywholesalefor1item #thinkitsadealbutisnt #moneywellwasted #lonelinesshurts #lonelinesssucks #hoardersburiedalive #itsaproblem™ #alscaregiving #amyotrophiclateralsclerosis #alsassociation #alsawareness #icebucketchallengefail #nocurefoundyet #sickmotherinlaw #shiga #shigajapan #shigaken #otsucity #wanitakashiro #misshomerightnow #imisslosangeles #homesick😭 (at Otsu, Shiga) https://www.instagram.com/p/Bt52KkXlva6/?utm_source=ig_tumblr_share&igshid=1ebhyqj2kpsu4

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Mrs S took this one of me in Redondo Beach before she left to come to Japan to care for お母さん in her final months. @hotdogandbunphotos is us, and we’ll be available for headshots when we return. #wemissyoulosangeles #losangelestojapan #losangelesisourhome #welovela❤️ #headshotsbyhotdogandbun #hotdogandbun #meandmrss #meandmybear #mrssandlittleb #ilovelamorethanrandynewman #lifeinjapan2019🇯🇵 #angelinoinshiga #wanitakashiro #30lbsago😭 #havingfunhere #alscaregivers (at Otsu, Shiga) https://www.instagram.com/p/ByULwAhpkhr/?igshid=su39e7nokfdk

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This whole ALS nightmare story has been happening since 8/2018 and I’ve been living in Japan full time to help my wife care for her mother. Tonight’s been the worst of it. #amyotrophiclateralsclerosis #alscaregiving #motherinlaw #japan #caregivinginjapan #shiga #滋賀県 (at Wanitakashiro, Otsu-shi) https://www.instagram.com/p/CASnY54JncY/?igshid=k6rztprcpldm

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Went for a walk with Mrs S this morning. I had to get her out of the house awhile. ALS caregiving is extraordinarily difficult because it can wear you down, but BPD makes it all the more worse and emotionally trying. #thistooshallpass⏳ #alscaregiving #bpdisworse #liviasoprano #hardtimesmakestrongpeople #ironsharpensiron⚔️ #madeinjapanbutalsomadeinusa #shigaken #ilovemybear #derführernotsomuch #shigajapan #homeiswhereversheis (at Otsu, Shiga) https://www.instagram.com/p/ByFWSzZBP6f/?igshid=3bw9rno65i19

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A post shared by J Eric Sandoval (@unconventionalcommonsense)

It’s only been about 10 days and it’s reached a head already. The doctor had warned my wife that her behavior and personality could change. She was always physically abusive to my wife as a child all the way until she was an adult. She stopped violence towards her when she became an adult, but was still continually mentally and emotionally abusive ever since. Her visits were NEVER pleasant, not even once throughout the entire 15 years we’ve been together. Never a kind word, never a sweet or soft moment, never once. Even with ALS and very little remaining physical strength, her demand to continue her compulsive shopping habit got her to get physical with my wife for the first time in the 20 years since escaping to the USA to start a life for herself and pursue her own dreams. My wife is THE most honorable individual I’ve ever known in all my life. She’s such a great daughter to this awful person, even though she’s a vicious tyrant. The lengths to which my wife goes out of her way to please her mother makes me look like a bad son, like one of the Menéndez Brothers. She started hitting my wife, grabbing at her hair, and kicking her to which my wife had to hold her wrists to stop her from beating on her further. I’ve NEVER raised my voice at her but I lost my cool and screamed at her like Yakuza. But remember, this is the woman who picked a fight with a Yakuza gangster over a damn parking space and won. We’re so stressed out right now. ALL the neighbors hate her, by the way. She’s THAT lady, the neighborhood lady nobody likes. But who else is going to take care of her?? My brother in law is a nice enough guy and all, but he’s lacking in human empathy as he may actually have Asperger’s Syndrome and is pretty useless as far as caregiving goes. Your mother’s your mother, what are ya gonna do? #alscaregiving #poisonousmoms #abusivemotherinlaw #violentmothers #mywifedoesntdeservethis #caregiverblues #abusivemothers #hardtimesinjapan #gaveupourlivesforthis #leftlosangelesforthis #ibearwitness #sharingeventhebad #eldercaregiving #violentmotherinlaw #makesmesad #nothingicando #cantevenhelp #allicandoiswatch #gaveupagreatapartmentforthisshit #intensemoment (at Otsu, Shiga) https://www.instagram.com/p/BtvR8FFFzQq/?utm_source=ig_tumblr_share&igshid=1p2194jxmav1c

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We’ve got ninjas, ya know. Not only does my mother-in-law have ALS, she’s had a years long feud with another old lady who got one over on her years ago that’s metastasized into full on paranoia to the point that after I’d already installed numerous cameras in her house, she’d turned the paranoia up to 11 and locked the place down. Fam, I’ve got cameras looking at cameras. I put more cameras than CIA Langley up into this house. But that wasn’t enough, so I’ve got a 7 lock entrance and exit with 2 bike locks, a gate lock, 2 door locks, a combination door lock, and a damn Yakuza door. Those of you unaware of what that means, it’s an extra door at the inner threshold that ONLY gangsters have. They have it because they still bust into rival families’ homes with swords and knives when syndicates go to war. So, my anti 2nd Amendment friends, don’t go thinking that just because they don’t have guns here that they don’t have violence. But at the same time, IF they’re warring, they’ll go on TV to warn citizens to stay away from certain area for their own safety. But that’s a discussion for a whole other video. Stay tuned! #lifeinshiga #lovethisneighborhood #shiga #newlifeinjapan #alscaregiving #ninjaproblems #warringoldladies #toomanylocks #lockedinbychoice #firehazards #wontbeeasy #paranoidmotherinlaw #selfimposedprison #comeonthisjourneywithme #dontknowwhatimdoingbutitsfun #nothingiseasybutlovingher #lovemywife #alssucks #hardtimesbutgoodtimes #bestoftimesworstoftimes #nevergiveuponwhoyoulove #nevergiveuponwhatyoulove (at Otsu, Shiga) https://www.instagram.com/p/BtfihpUlmXb/?utm_source=ig_tumblr_share&igshid=1dhdx7wjqdvia

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Just a teeny tiny little smidgen of a minuscule portion of what me and B-Bear (@mrssandlittleb ) are surrounded by here I n hoarder heaven, mixed with one of my ALL TIME FAVORITE CDs, John McLaughlin’s Trio’s Que Alegría (1992), with the baddest percussionist of all time, (one man’s opinion, worth only 1 vote), Trilok Gurtu, and featuring 2 different bassists, Dominique Di Piazza and Kai “Kiki” Eckhardt. I can’t feature the whole thing but fugghit, either you love music or you don’t. Back to topic, if Ma weren’t such a bonafide hoarder of epic proportions, you might notice that this is a freakin 4 bedroom house. But alas, like Jerry Seinfeld and the ever shrinking by coat of paint after coat of paint apartment, this prison house with poor insulation and no central ventilation, it’s a little TIGHT around here. But I don’t care. I love it here. More to come. #thanksforlistening #joinmeonthisjourney #lifeinshiga #lovethisneighborhood #shiga #welcometothejungle #johnmclaughlintrio #trilokgurtu #quiettimewithmylove #sharingourstory #losangelestojapan #newlifewithmylove #alscaregiver #comewithme (at Otsu, Shiga) https://www.instagram.com/p/Btf8aDIlcJp/?utm_source=ig_tumblr_share&igshid=pzxyv3ki8u7z