What a wonderful partner. I’ve been fighting cancer now for five years and my husband has stuck with me the whole time too. My immune system been so low so he can’t see his friends or go a lot of places. He makes the sacrifices anyway.
Everyone probably thinks the caring for her or giving up foods/activities is the hardest part, but speaking from experience, watching your loved one go through pain you can't help them with is much harder 😢
It’s not a competition, we can’t and shouldn’t even compare the situations. Like oh what’s the hardest part? No… not at all please. It’s hard for both, period
Sasha is an absolute doll. We need more Sashas. There are so many handicapped/disabled people that need support like Sasha. Just a partner that understands and loves their life together, even if it's difficult or different.
Beth, don’t ever feel guilty for Sasha! If she wanted to she could have walked away already long time ago, but she stays for you, because she loves you, and you deserve that love. There is no need to feel guilty, just appreciate that you have someone that loves you as much as Sasha does, you can tell from this video that she means a lot to you and helps you pull through. I really hope your condition will get better some day ❤️
It’s so hard not being feel guilty. I have different conditions, but to a large degree my partner is my caretaker. It’s hard feeling like you’re stripping someone of their youth so that can stay and home and take care of you. I don’t know if there is anyway to get rid of this feeling
@Paigewe, same. I have fibromyalgia, and my husband helps and supports me without a second thought. It's really hard not to feel guilty, for sure. I'm very thankful, though, because I know that there are a lot of people who have partners who are not supportive or who don't have any help at all.
@@Princess_Lehlohonolo, I'm not Sasha. I just quoted her from what She said in the video. I loved what she said. Btw, the girl Beth from the video is in the comments though. 💜💜
I am so sorry you are suffering. It is really clear to me why that is. Your diet is toxic. As someone that has allergies, you simply cannot be eating clover butter, wheat rolls, or bacon. Clover is full of toxic oils that cause inflammation. You need grass fed meat, bone broth and real butter. The redness on your face is showing that inside your body is inflamed and acidic. That’s why it feels like acid has been thrown on to your face, because inside you are literally acidic, you are burning from the inside out. This is not a life sentence and you can heal yourself, but it starts with what you eat every single day. Grass fed beef, no bacon. Doctors are useless healers, but are great at surgery and using medical equipment such as X-rays. This is why you are a medical mystery. Because they don’t understand healing. You can overcome, literally within weeks. This does not have to be your life story🙏✨
@@soulfire. I have tried eliminating many things from my diet. I have been gluten and dairy free. On low histamine. Keto. Sugar free. I’ve tried everything. I’m now at the point where there are only a few foods that don’t cause reactions
@@Bethtsangarides That’s great that you have tried all of those options. Have you tried drinking only grass fed bone broth for a few weeks straight? Your gut is not healthy, that’s why you have so many allergies and can get anaphylaxis, it all comes from the gut. There is no way you can get healthy whilst eating clover butter. It’s impossible. Good luck to you. Healing is possible and I really hope you find it🙏🍀✨
I am allergic to dust, mold, pollen and cat hair, and I will never complain again. Sasha is an angel, such a great partner, we all should one day have that kind of person to love us.
Obviously no one can diagnose on the internet but some of this sounds like my Mast CellActivation Disorder. I got diagnose through a bone marrow biopsy. I hope you're able to figure more of it out
Unfortunately, it seems a normal thing, MCAS, in the US. So many toxins. Check out Cleveland Clinic and other resources in America for ideas you could help you.
The worst flare up looked like a third degree burn which I'm amazed that her skin recovered so well from and her condition is obviously more than just skin deep for her to need full-time help and mobility aids . Even with her flare-ups she's got an amazing bone structure and tall elegant proportions which reminds me so much of a ballerina !
@@Bethtsangarides don't give up searching for a solution either with conventional medicine or alternative. Everyone's different and you never know what's going to work for you!
@@Bethtsangarides im not sure what other conditions you have but ehlers-danlos syndrome causes a lot of different problems and mcas/mcad is a semi common comorbidity. i have severe eds but thankfully avoided the mcas. although i have seen people with eds with mcas that is as severe as what you are going through
Having someone by our side really make fighting thru our bad days worth it. I’m so happy for these two lovely souls, that the found each other, and love each other thru every moment.
The love Sasha has for Beth is so beautiful. It’s so sad to see Beth say that she feels guilty and doesn’t think she deserves it when she absolutely does! It’s obvious they both make each other happy. I’m glad they have each other.
I’ve seen this girl on TikTok on live a few times and she’s so nice. She never gets offended if people ask the same questions especially if her face flares up 💗
First thing I noticed is that she has cats. She's allergic to everything but has cats! Cats are a VERY common allergy for people, I myself am allergic to them. I get hives, my eyes swell shut, my breathing gets tight, I itch all over. It's just amazing to me that she's that allergic to everything but has no problem around cats.
You’re thinking about this as “environmental allergies”, and it’s not. It’s Systemic Allergies. Cats are something she probably has that aren’t a trigger. We have no idea, until we eliminate things, if it’s a current systemic allergy. I spent a month without pets, with no change, so some animals can be safe for us. It depends on if we have the “”right” antibodies at the time. Silky haired pets, I’m fine. Short haired cats and dogs, nope! I’ve been tested for “environmental” allergies several times by specialists and I seem to have none. Yet, internal system allergies are rampant. My body doesn’t say I’m allergic, however, but the reaction clearly is. It’s complicated
My sister had PoTS and severe allergies with facial rash like you. She had 6 food she could eat without reacting. She is now on an injectable m9nocl9nal antibody called dupixent, and its been amazing for her.
Beth, every time you feel worthless and unlucky, remember there are so many of us out there who despite being grateful for our good health, have never experienced the kind of reciprocal and magical love you are living (and probably never will). Embrace every single of your steps, as I am sure you are as beautiful inside as you are evidently outside. Sending prayers and good vibes to both your amazing partner and yourself! I am sure with the rapid progress of AI, science will find solutions to your oddity and your story and your case will inspire generations to come.
Damn girl that sucks ive heard of people allergic to their own sweat and a story about a baby that was allergic to their own mother i hope they find a cure for your illness stay strong and good luck
I have a very similar issue. Originally diagnosed with MCAS by an Allergist/Immunologist. A skin and tissue biopsy showed TMEP Aggressive Systemic Mastocytosis, a KIT gene mutation. I’m on 17 medications to be able to function. I still work and I try to make life happen, because I have a special needs daughter who is medically fragile and a Dad with Dementia. I’m allergic to a lot of “natural” things, but do ok sometimes with synthetics. It’s a mess. And like she said, it changes daily. I have a lot of food allergies, protein, fruits, several vegetables, anything processed and any animal products. The biggest problem is the way labs work, they will give us false negative results because they’re captured in preservatives or kept in plastic, or put in the fridge, or a million other reasons. They also only test towards the most common variants, and we largely have rare variants. I have not met a doctor, medical personnel or specialist who has ever seen or heard of my type of Mastocytosis, so getting help is nearly impossible. There aren’t enough people with it to do any medical trials or case studies. Sometimes they try a lot of meds and Biologics. I’ve actually started having other disorders, due to the Biologics and they become life threatening. It’s wild and frustrating, that is for sure.
They have such a beautiful relationship. Beth seems really thankful for everything Sasha does for her. I so wish they will have a beautiful, long and healthy life and that medicine will find a way to help Beth and others with similar conditions
When i start feeling down and not appreciative of life i come and watch these videos just to snap out of the ignorance because so many people out there have it way worse and have actually real life problems that sometimes cant be cured, can be painful, can be emotionally and physically depressing, while being a burden as far as not being able to do things on your own due to lack of mobility physical movement, having to have someone stop their entire life to care for you incase you happen to fall , seizure, even having to pick you up unclothe bathe you clothe you,feed you..etc ugh im just typing thing and i honestly need to be grateful for having the ability to do all the things i can do on my own that alot of people on earth unfortunately don't have the ability to do. & For some its something that's permanent in their lives. Moral of the story people, please dont Be a bully teach your kids also, every body is different and you never know what a person is going thru, and just because youre not born with a rare condition doesnt always mean youre completely in the clear , lots of people get older and have misfortunes occur , god forbid this happens to anybody. Just be nice and be thankful for all you can and have in life, dont take things for granted because we sometimes dont appreciate the little things until those little things are taken away and then we realize how the small things in life are the most important. Be thankful be humble and it doesnt cost a cent to be nice and ask someone how theyre feeling. At least as 1 person each day how they are feeling, not how they are doing ...how they feel is way more important. Anyways let me stop rambling you all get the point. Copy and paste this to your note to self categories , since alot of times we read things like this and in the moment it makes us want to do better, then 5 min later it washes away. Some positive affirmations on your phone screen and lock screen will make your days so much better and brighter. 2024 we all have heavy hearts and feel a weight on us but thats because theirs so much negativity especially coming from this here device, put some positive quotes or pictures on your phones screen and just watch how your mood completely changes every time youre reading or seeing that reminder. We all gotta help each other heal. Sometimes the strongest person needs a hug and a helping hand too. It takes alot of energy and strength to be a strong person holding it all together to make everyone better. Anyways alright thats enough from me .bye yall subscribe to me if i should start posting some positive affirmation type of videos. Ill do it based on the amount of subscribers that decide to follow me , this way i know yall wanna hear from me everyday. Peace guys
Make me wonder if she's a twin with in a twin. Not a Dr, but I've watch a lot of documentaries and it really messes your system up. Just possible. Yes you can be your own twin.
Chimerism you might be talking about? Her eyes are different color so that's actually a sign of Chimerism for some but could be coincidence. I wonder if shes had a full panel dna test done. But even with that can be hard to diagnose it seems. It depends which part of her body has twin dna. I don't know much more than this
i dont expect the subject to read this but.. I have a friend who has a lifelong.. adult anyways similar condition.. misdiagnosed over and over.. tried every medication, diet, lifestyle adjustment.. and has just, finally seen a specialist dentist who discovered pockets of infection from past dental work.. she is going tthru the process of having all root canals removed and hopfully healing her body. Dont overlook dental problems as a strange source
Yeah it seems like if she had extensive testing that someone would have discovered what's triggering it, even if it's a defective gene.... getting to the right person always makes a difference...
@@KarenQJ1 took me 25 years to get diagnosed with my illness. and i know others that took even longer. rare illnesses are unfortunately often hard to find out what they are. especially with so many dr's that turn you away or dont listen.
I also have chronic illness issues. EDS. I rely on my wife as well and can identify with this. You two are so wonderful and inspiring. I can see the patience calm and great communication you both have navigating your relationship.
My sister went through a period of time where she seemed to be allergic to her own sweat. Fortunately, she only got hives, so it was annoying but not dangerous. My mom has a friend who is allergic to just about everything and has to wear what she calls a "space suit" anytime she leaves her house because so many things are dangerous for her. Immune systems are just plain weird sometimes. I'm glad this lady seems to be living a good life, all things considered.
Is this rash only on the face? Long shot but that's where side sleepers' faces make contact with a pillow when sleeping. Many laundry ingredients are allergens or irritants to sensitive skin.
I first had symptoms of nervous allergy reaction 10 years ago. The itchy spots would appear and disappear right before your eyes. Last year I have developed what seems to be food allergy. But the reaction was so intense, that I started to have hives after eating literally anything. So I started to take antidepressants, and this year I started to take antianxiety meds, so there looks like have less symptoms now. If not the war and our f*** neighbors, I wouldn't have to deal with all that awful situation
I understand the pain. I'm 45 years old and just got developed an allergy to rubber slippers, it's called contact dermatitis. Ever since I was a todler I wore rubber slippers at home, I live in a tropical country. Just this March that I noticed my feet were very itchy, bumpy with trace of my rubber slippers whenever I wore it. The burning sensation from itching was so painful and made me cry. Doctor told me to be careful of allergens, chemical reaction like dye. He recommended me not to wear rubber slippers anymore. Even if it's healed already, the layer my feet skin got very thin now due to wound and scubs.
Fact: the same body wash you used for years, the company can slightly change the formula to make it cheaper and you won’t notice unless you have this condition. I’m so sorry that this has happened to you. I hope the doctors can figure it out.
I do have reactions to my cats but sometimes we have to sacrifice certain things and I wouldn’t be here without them I love them and they don’t cause severe reactions
@@theautisticrebel6064 My Dog is my allergy trigger. Lots of other things affect me because of my dog's allergen. This lady's cat could be making her health much worse.
What an amazing person Sasha is🥹I hope someday someone will care that much about me to stick around through my health conditions. Couple goals💕Beth’s eyes are gorgeous anyone else noticed they are different colours?🥰
I have mast cell activation syndrome/pots syndrome and though I haven't been quite as severe I have been close. If it's not a very severe form of it mastocytosis would be a possibility. A lot of doctors don't even know what it is at all so if it hasnt been ruled out I would check those first. I have a very similar but less severely presenting situation because of those and have my whole life. I wish you luck in your medical journey. Lots of love from a fellow house bound allergic to life and gravity spoonie ❤
I had the same thought, I finally got a formal systemic mastocytosis diagnosis last month after the results of my bone marrow biopsy came back... It's not as severe as her symptoms, but it limited my life so much 😔 Every time I have flushing episodes I get rashes that look like 2nd degree burns, it's the worst sensation ever... I just want to cry, and this is just the tip of the iceberg
I was going through this for the longest time. I have to keep epipens around. Turns out.. I'm allergic to alcohol (any type) so strong perfumes will often make me break out really. This includes other people wearing it or just.. being around it. Walking around a mall is hell. Having to look at every ingredient in a product including make up. On top of that, I have rosacea and am allergic to cats (I also have Athsma). I take my meds and manage now. It's not fun but... I'm living my life to the fullest :)
My fiancé Thanh helped me so much before he died of car crash in 2020: these are my conditions: I miss him so much 😢😢😢 1. Schizophrenia 2. Anxiety 3. Depression 4. Social anxiety 5. Gastroparesis 6. Acid reflux 7. Seizures 8. curve in spine 9. Back spasms and pain 10. chronic fatigue 11. Asthma 12. Tachycardia 13. Recurrent utis 14. severe allergic reactions 15. Many allergies
Sounds like MCAS and MCS. A very severe version. ❤️ Cooking onions, scented products, chemicals, and mint/menthol have been the worst things for me. I just tell people I am allergic to the world, it’s easier than explaining. My caregiver was my wife but she left. Trying to figure out how to get by on my own now that I have gotten so bad (with many other illnesses) has been difficult.
It took 3 years and tons of doctors and allergists to get my diagnosis- Mastocytosis. Sound like everything you've described. I was close to death. I called the rash around my neck "the necklace of pain". My organs were shutting down and I needed a cane or a wheelchair sometimes for the body pain. It was very difficult to breathe. My brother says that I'm allergic to life. I often feel bad for my husband, because I wasn't like this when we were married. He's too wonderful! ❤ My life has got better since my diagnosis and knowing what I'm allergic to for now. Even my specialist that gave me the diagnosis is pretty much clueless. It's pretty much one day at a time. There's a lab in Houston, Texas called Gene by Gene that tests blood for this gene mutation. I hope you find your diagnosis and with it- some help!
What an amazing partner she has ❤❤ she obviously loves her and wants to Make sure she is okay ❤❤❤ Sasha you are amazing, you could have walked away but because of the amazing person you are you help the one you love ❤❤
You are a strong and resilient young woman Beth, and Sasha you are an angel sent to love and care for Beth. We need more kind and loving people like your two in this world. Sending you all hugs and hopes that one day there will be a cure for this condition. No one deserves this. 🫶
she is so beautiful and strong...! I hope some miracles to happen for you. It is paniful to see such strong and beautiful person suffering too much. May god bless you, and heal your condition. 🙏
She is lucky not to be be allergic to cats. I sadly can't go anywhere near any animal with fur. Spicy foods... I get similar rashes on my face, shoulders, across chest. I hope beth can get better from this.
I wish you would have been around when I was in high school. I had the worst acne of probably anyone in the school. (1,500 students) I tried everything. I know its nowhere near the same, but back then they didnt talk about this stuff, so I felt so much shame. Like I was dirty, or ate poorly (especially chocolate). Your video would have helped me so much--thank you for sharing your openness and confidence!
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What a wonderful partner. I’ve been fighting cancer now for five years and my husband has stuck with me the whole time too. My immune system been so low so he can’t see his friends or go a lot of places. He makes the sacrifices anyway.
You’ve got this love. You’ll get through it
lost my mom oct 2023 from cancer 😔 keep fightin 😊 & he's a good man
I'm sorry about your cancer, but I'm very glad that you have a loving partner.
I lost my dad in 2019 to Leukemia. I hope you are in remission soon! 🙏🏻🤞🏻❤️
@@rachelroussey7048 I'm sorry for your loss.
Everyone probably thinks the caring for her or giving up foods/activities is the hardest part, but speaking from experience, watching your loved one go through pain you can't help them with is much harder 😢
It’s not a competition, we can’t and shouldn’t even compare the situations. Like oh what’s the hardest part? No… not at all please. It’s hard for both, period
Sasha is an absolute doll. We need more Sashas. There are so many handicapped/disabled people that need support like Sasha. Just a partner that understands and loves their life together, even if it's difficult or different.
Beth, don’t ever feel guilty for Sasha! If she wanted to she could have walked away already long time ago, but she stays for you, because she loves you, and you deserve that love. There is no need to feel guilty, just appreciate that you have someone that loves you as much as Sasha does, you can tell from this video that she means a lot to you and helps you pull through. I really hope your condition will get better some day ❤️
It’s so hard not being feel guilty. I have different conditions, but to a large degree my partner is my caretaker. It’s hard feeling like you’re stripping someone of their youth so that can stay and home and take care of you. I don’t know if there is anyway to get rid of this feeling
@@PaigeweYES!! I’m going through this right now. He keeps reeling me to relax but I just feel so bad. We’re sssooo young.
@Paigewe, same. I have fibromyalgia, and my husband helps and supports me without a second thought. It's really hard not to feel guilty, for sure.
I'm very thankful, though, because I know that there are a lot of people who have partners who are not supportive or who don't have any help at all.
@@kaymitchell6143 I get that! I’m 22 and he’s only 21. He’s already been taking care of me for years. I feel like I’m robbing him
@@Lionesse-z41553 it’s so hard! I’m also very thankful. The support is a truly different kind of love.
"Being able to spend it with you is better than spending it on my own." -Sasha. 💜💜
You're lesbians, so the mystery beyond her condition is solved!
Thank you for loving her
May God bless u, from south africa ❤🇿🇦
@@Princess_Lehlohonolo, I'm not Sasha. I just quoted her from what She said in the video. I loved what she said. Btw, the girl Beth from the video is in the comments though. 💜💜
Right? It's so sweet 😍
100th like :)
I am so greatful to have been given this opportunity 💜remember your perfectly imperfect the way you are 🫶
Thanks for sharing your story and your love. Take care of each other ❤.
I am so sorry you are suffering. It is really clear to me why that is. Your diet is toxic. As someone that has allergies, you simply cannot be eating clover butter, wheat rolls, or bacon. Clover is full of toxic oils that cause inflammation. You need grass fed meat, bone broth and real butter. The redness on your face is showing that inside your body is inflamed and acidic. That’s why it feels like acid has been thrown on to your face, because inside you are literally acidic, you are burning from the inside out. This is not a life sentence and you can heal yourself, but it starts with what you eat every single day. Grass fed beef, no bacon. Doctors are useless healers, but are great at surgery and using medical equipment such as X-rays. This is why you are a medical mystery. Because they don’t understand healing. You can overcome, literally within weeks. This does not have to be your life story🙏✨
@@soulfire. I have tried eliminating many things from my diet. I have been gluten and dairy free. On low histamine. Keto. Sugar free. I’ve tried everything. I’m now at the point where there are only a few foods that don’t cause reactions
@@Bethtsangarides That’s great that you have tried all of those options. Have you tried drinking only grass fed bone broth for a few weeks straight? Your gut is not healthy, that’s why you have so many allergies and can get anaphylaxis, it all comes from the gut. There is no way you can get healthy whilst eating clover butter. It’s impossible. Good luck to you. Healing is possible and I really hope you find it🙏🍀✨
Thank you so much for coming forward and sharing your story. People have no clue about any of this. It's important that they see
When you love somebody, it’s not really caregiving. It’s an act of love. But caregivers also need to make sure they are mentally healthy
I am allergic to dust, mold, pollen and cat hair, and I will never complain again. Sasha is an angel, such a great partner, we all should one day have that kind of person to love us.
Obviously no one can diagnose on the internet but some of this sounds like my Mast CellActivation Disorder. I got diagnose through a bone marrow biopsy. I hope you're able to figure more of it out
My doctors have always treated it as MCAs however because of the severity of it even doctors that specialise in MCAs have turned me away
@@Bethtsangarides Has chimerism ever been considered or tested?
@@Bethtsangaridesu are strong... Have u come to the usa to be treated?.... I sent u luv and prayers... I'm glad ur partner is there be side u.. ❤❤❤
I was also thinking about mcas. I have a histamine intolerance. I’m intolerant of something my body makes!
Unfortunately, it seems a normal thing, MCAS, in the US. So many toxins. Check out Cleveland Clinic and other resources in America for ideas you could help you.
What a lovely and kind woman Sasha is. She is one in a billion.
The worst flare up looked like a third degree burn which I'm amazed that her skin recovered so well from and her condition is obviously more than just skin deep for her to need full-time help and mobility aids . Even with her flare-ups she's got an amazing bone structure and tall elegant proportions which reminds me so much of a ballerina !
Thank you so much. Yes along with the skin problems I also suffer with many other conditions.
@@Bethtsangarides don't give up searching for a solution either with conventional medicine or alternative. Everyone's different and you never know what's going to work for you!
She gives off gracious vibes also. Like she would be a graceful ballet dancer.
@@Bethtsangarides im not sure what other conditions you have but ehlers-danlos syndrome causes a lot of different problems and mcas/mcad is a semi common comorbidity. i have severe eds but thankfully avoided the mcas. although i have seen people with eds with mcas that is as severe as what you are going through
Having someone by our side really make fighting thru our bad days worth it. I’m so happy for these two lovely souls, that the found each other, and love each other thru every moment.
The love Sasha has for Beth is so beautiful. It’s so sad to see Beth say that she feels guilty and doesn’t think she deserves it when she absolutely does! It’s obvious they both make each other happy. I’m glad they have each other.
Awww.That would suck but props to her partner for being so sweet, patient,caring and loving to her.. 💜
I’ve seen this girl on TikTok on live a few times and she’s so nice. She never gets offended if people ask the same questions especially if her face flares up 💗
fr her eyes are so BEAUTIFUL
First thing I noticed is that she has cats. She's allergic to everything but has cats! Cats are a VERY common allergy for people, I myself am allergic to them. I get hives, my eyes swell shut, my breathing gets tight, I itch all over. It's just amazing to me that she's that allergic to everything but has no problem around cats.
You’re thinking about this as “environmental allergies”, and it’s not. It’s Systemic Allergies. Cats are something she probably has that aren’t a trigger. We have no idea, until we eliminate things, if it’s a current systemic allergy.
I spent a month without pets, with no change, so some animals can be safe for us. It depends on if we have the “”right” antibodies at the time. Silky haired pets, I’m fine. Short haired cats and dogs, nope!
I’ve been tested for “environmental” allergies several times by specialists and I seem to have none. Yet, internal system allergies are rampant. My body doesn’t say I’m allergic, however, but the reaction clearly is. It’s complicated
Very good point
I think it’s great she’s not allergic to them ❤️
Good point
Good observation
I'm allergic to myself too, at least im not alone.
Ugh my god, that looks so incredibly painful. I'm so happy they have eachother and Beth has support
My sister had PoTS and severe allergies with facial rash like you. She had 6 food she could eat without reacting. She is now on an injectable m9nocl9nal antibody called dupixent, and its been amazing for her.
her confidence is so beautiful!!!
Thank you ❤
Beth, every time you feel worthless and unlucky, remember there are so many of us out there who despite being grateful for our good health, have never experienced the kind of reciprocal and magical love you are living (and probably never will). Embrace every single of your steps, as I am sure you are as beautiful inside as you are evidently outside. Sending prayers and good vibes to both your amazing partner and yourself! I am sure with the rapid progress of AI, science will find solutions to your oddity and your story and your case will inspire generations to come.
She is so beautiful even with scars.she is strong in pain.
Damn girl that sucks ive heard of people allergic to their own sweat and a story about a baby that was allergic to their own mother i hope they find a cure for your illness stay strong and good luck
I have a very similar issue. Originally diagnosed with MCAS by an Allergist/Immunologist. A skin and tissue biopsy showed TMEP Aggressive Systemic Mastocytosis, a KIT gene mutation.
I’m on 17 medications to be able to function. I still work and I try to make life happen, because I have a special needs daughter who is medically fragile and a Dad with Dementia.
I’m allergic to a lot of “natural” things, but do ok sometimes with synthetics. It’s a mess. And like she said, it changes daily. I have a lot of food allergies, protein, fruits, several vegetables, anything processed and any animal products.
The biggest problem is the way labs work, they will give us false negative results because they’re captured in preservatives or kept in plastic, or put in the fridge, or a million other reasons. They also only test towards the most common variants, and we largely have rare variants.
I have not met a doctor, medical personnel or specialist who has ever seen or heard of my type of Mastocytosis, so getting help is nearly impossible. There aren’t enough people with it to do any medical trials or case studies. Sometimes they try a lot of meds and Biologics. I’ve actually started having other disorders, due to the Biologics and they become life threatening.
It’s wild and frustrating, that is for sure.
Good for her that she found somebody that can help her throw her a type of need and they seem like they love each other
They have such a beautiful relationship. Beth seems really thankful for everything Sasha does for her. I so wish they will have a beautiful, long and healthy life and that medicine will find a way to help Beth and others with similar conditions
Beth, you are a beautiful, strong young woman. And so is Sasha. I wish you both a happy life.
When i start feeling down and not appreciative of life i come and watch these videos just to snap out of the ignorance because so many people out there have it way worse and have actually real life problems that sometimes cant be cured, can be painful, can be emotionally and physically depressing, while being a burden as far as not being able to do things on your own due to lack of mobility physical movement, having to have someone stop their entire life to care for you incase you happen to fall , seizure, even having to pick you up unclothe bathe you clothe you,feed you..etc ugh im just typing thing and i honestly need to be grateful for having the ability to do all the things i can do on my own that alot of people on earth unfortunately don't have the ability to do. & For some its something that's permanent in their lives. Moral of the story people, please dont Be a bully teach your kids also, every body is different and you never know what a person is going thru, and just because youre not born with a rare condition doesnt always mean youre completely in the clear , lots of people get older and have misfortunes occur , god forbid this happens to anybody. Just be nice and be thankful for all you can and have in life, dont take things for granted because we sometimes dont appreciate the little things until those little things are taken away and then we realize how the small things in life are the most important. Be thankful be humble and it doesnt cost a cent to be nice and ask someone how theyre feeling. At least as 1 person each day how they are feeling, not how they are doing ...how they feel is way more important. Anyways let me stop rambling you all get the point. Copy and paste this to your note to self categories , since alot of times we read things like this and in the moment it makes us want to do better, then 5 min later it washes away. Some positive affirmations on your phone screen and lock screen will make your days so much better and brighter. 2024 we all have heavy hearts and feel a weight on us but thats because theirs so much negativity especially coming from this here device, put some positive quotes or pictures on your phones screen and just watch how your mood completely changes every time youre reading or seeing that reminder. We all gotta help each other heal. Sometimes the strongest person needs a hug and a helping hand too. It takes alot of energy and strength to be a strong person holding it all together to make everyone better. Anyways alright thats enough from me .bye yall subscribe to me if i should start posting some positive affirmation type of videos. Ill do it based on the amount of subscribers that decide to follow me , this way i know yall wanna hear from me everyday. Peace guys
those eyes are beautiful!! thank you for sharing your story
These last couple of years my wife too has been my care giver I love her so much for beingthere withme!!!! ❤❤❤❤❤
This reminds me of my partner too, yet I can’t even imagine my life without him.
The beautiful bond, & Uncondional Love between her, & her partner. Aww. My heart!! 💜💜
Make me wonder if she's a twin with in a twin. Not a Dr, but I've watch a lot of documentaries and it really messes your system up. Just possible. Yes you can be your own twin.
Chimerism you might be talking about? Her eyes are different color so that's actually a sign of Chimerism for some but could be coincidence. I wonder if shes had a full panel dna test done. But even with that can be hard to diagnose it seems. It depends which part of her body has twin dna. I don't know much more than this
Vanishing twin via absorption… heterochromia. I didn’t notice her having it.
What a beautiful relationship they have, i wish them all the best ❤
i dont expect the subject to read this but.. I have a friend who has a lifelong.. adult anyways similar condition.. misdiagnosed over and over.. tried every medication, diet, lifestyle adjustment.. and has just, finally seen a specialist dentist who discovered pockets of infection from past dental work.. she is going tthru the process of having all root canals removed and hopfully healing her body. Dont overlook dental problems as a strange source
Yeah it seems like if she had extensive testing that someone would have discovered what's triggering it, even if it's a defective gene.... getting to the right person always makes a difference...
@@KarenQJ1 took me 25 years to get diagnosed with my illness. and i know others that took even longer. rare illnesses are unfortunately often hard to find out what they are. especially with so many dr's that turn you away or dont listen.
Wow! What a lucky catch! I hope she's able to heal now!
@dolleyes9232, it took me ten years to get my fibromyalgia diagnosis. It was crazy!
I also have chronic illness issues. EDS. I rely on my wife as well and can identify with this. You two are so wonderful and inspiring. I can see the patience calm and great communication you both have navigating your relationship.
My sister went through a period of time where she seemed to be allergic to her own sweat. Fortunately, she only got hives, so it was annoying but not dangerous. My mom has a friend who is allergic to just about everything and has to wear what she calls a "space suit" anytime she leaves her house because so many things are dangerous for her. Immune systems are just plain weird sometimes. I'm glad this lady seems to be living a good life, all things considered.
She’s blessed with a beautiful soul to help her thru life!! That’s awesome I love this but hate she’s going thru it.
the way Sasha loves her unconditionally is really endearing
Worst case of MCAS ever? I have a much milder version. I really hope they find a way to stabilise you 😢
What a sweet couple. This poor beautiful young woman with her condition. She is so lovely in every way. I pray she finds some healing.
She is a beautiful girl im glad shes in a good relationship 😊
Your story is so touching I’m crying
Is this rash only on the face? Long shot but that's where side sleepers' faces make contact with a pillow when sleeping. Many laundry ingredients are allergens or irritants to sensitive skin.
What a beautiful couple. I hope this woman can get some help for her guilt over her partners support.
I first had symptoms of nervous allergy reaction 10 years ago. The itchy spots would appear and disappear right before your eyes. Last year I have developed what seems to be food allergy. But the reaction was so intense, that I started to have hives after eating literally anything. So I started to take antidepressants, and this year I started to take antianxiety meds, so there looks like have less symptoms now. If not the war and our f*** neighbors, I wouldn't have to deal with all that awful situation
Your awful neighbours being the Ruzzians, I infer.
Poor thing and she is so strong and sending strength and positive energy and happy life and amazing couple ❤❤❤❤❤
interesting that she has multiple cats though...
I understand the pain. I'm 45 years old and just got developed an allergy to rubber slippers, it's called contact dermatitis. Ever since I was a todler I wore rubber slippers at home, I live in a tropical country. Just this March that I noticed my feet were very itchy, bumpy with trace of my rubber slippers whenever I wore it. The burning sensation from itching was so painful and made me cry. Doctor told me to be careful of allergens, chemical reaction like dye. He recommended me not to wear rubber slippers anymore. Even if it's healed already, the layer my feet skin got very thin now due to wound and scubs.
OH THANK GOD SHE IS NOT ALLERGIC TO CATS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Poor girl, breaks my heart so badly
Fact: the same body wash you used for years, the company can slightly change the formula to make it cheaper and you won’t notice unless you have this condition. I’m so sorry that this has happened to you. I hope the doctors can figure it out.
At least she’s not allergic to cats
She probably is.
@@theautisticrebel6064 she has a litter box in the bathroom.
I do have reactions to my cats but sometimes we have to sacrifice certain things and I wouldn’t be here without them I love them and they don’t cause severe reactions
@@Bethtsangarides well said. Glad you have little angels with you.
@@theautisticrebel6064 My Dog is my allergy trigger. Lots of other things affect me because of my dog's allergen. This lady's cat could be making her health much worse.
Her eyes are gorgeous!
You have such beautiful eyes.❤
Thank you ❤️
@Bethtsangrides, they remind me of Yuna from Final Fantasy X.
I was just wondering if she has heterochromia 😍 i agree! Beautiful eyes!!!
Prayers for you Hun... Stay strong and remember we're all praying for you
Their relationship is too sweet 🩷🩷🩷
It really does sound like MCAS!
What an amazing person Sasha is🥹I hope someday someone will care that much about me to stick around through my health conditions. Couple goals💕Beth’s eyes are gorgeous anyone else noticed they are different colours?🥰
But the caption is wrong, she's not allergic to her self.
Agree
I have mast cell activation syndrome/pots syndrome and though I haven't been quite as severe I have been close. If it's not a very severe form of it mastocytosis would be a possibility. A lot of doctors don't even know what it is at all so if it hasnt been ruled out I would check those first. I have a very similar but less severely presenting situation because of those and have my whole life. I wish you luck in your medical journey. Lots of love from a fellow house bound allergic to life and gravity spoonie ❤
Thought the same thing: MCAS
yep
I had the same thought, I finally got a formal systemic mastocytosis diagnosis last month after the results of my bone marrow biopsy came back... It's not as severe as her symptoms, but it limited my life so much 😔
Every time I have flushing episodes I get rashes that look like 2nd degree burns, it's the worst sensation ever... I just want to cry, and this is just the tip of the iceberg
I have MCAS too due to long covid
They look and seem great together. Hopefully this gets more awareness so she can find a solution
poor girl , she is beautiful, she looks like rose from.two and half men . love her eyes , I am glad she has someone wonderful in her life .
Sasha is an angel ~ Wishing you both a wonderful life together
Thank you so much
You are beautiful. The 2 of you are such a lovely couple. ❤
her eyes are gorgeous
Her girlfriend is truly a ride or die! I hope she gets better and they can have a good life together
This made me cry. Oh my goodness...God bless you both.
I was going through this for the longest time. I have to keep epipens around. Turns out.. I'm allergic to alcohol (any type) so strong perfumes will often make me break out really. This includes other people wearing it or just.. being around it. Walking around a mall is hell. Having to look at every ingredient in a product including make up. On top of that, I have rosacea and am allergic to cats (I also have Athsma). I take my meds and manage now. It's not fun but... I'm living my life to the fullest :)
thanks for sharing your story we appreciate it
What a beautiful couple ❤ I hope they can get a cure for her
I know someone who had the same thing. In the end, she had a narrowing of the ileo-cecal valve, after being treated she recovered. hugs from italy
And its okay to be taken care of - we're worthy of love, too.
My fiancé Thanh helped me so much before he died of car crash in 2020: these are my conditions: I miss him so much 😢😢😢
1. Schizophrenia
2. Anxiety
3. Depression
4. Social anxiety
5. Gastroparesis
6. Acid reflux
7. Seizures
8. curve in spine
9. Back spasms and pain
10. chronic fatigue
11. Asthma
12. Tachycardia
13. Recurrent utis
14. severe allergic reactions
15. Many allergies
her partner is WONDERFUL omg ❤❤️❤️
This is heart breaking
I'm sick and my partner takes care of me as well.
I could never repay him.
What an absolute beautiful relationship, just absolutely there for anything and everything!
Sounds like MCAS and MCS. A very severe version. ❤️
Cooking onions, scented products, chemicals, and mint/menthol have been the worst things for me. I just tell people I am allergic to the world, it’s easier than explaining.
My caregiver was my wife but she left. Trying to figure out how to get by on my own now that I have gotten so bad (with many other illnesses) has been difficult.
It took 3 years and tons of doctors and allergists to get my diagnosis- Mastocytosis. Sound like everything you've described. I was close to death. I called the rash around my neck "the necklace of pain". My organs were shutting down and I needed a cane or a wheelchair sometimes for the body pain. It was very difficult to breathe.
My brother says that I'm allergic to life. I often feel bad for my husband, because I wasn't like this when we were married. He's too wonderful! ❤
My life has got better since my diagnosis and knowing what I'm allergic to for now. Even my specialist that gave me the diagnosis is pretty much clueless. It's pretty much one day at a time.
There's a lab in Houston, Texas called Gene by Gene that tests blood for this gene mutation.
I hope you find your diagnosis and with it- some help!
I wonder if Dr. Sandra Lee could diagnose her.
Omg. . . ❤ her eyes was a gift 🥰
💚💙
What is the cause of Beth’s mobility issues?
she's so pretty wow and those eyes!
Have you been tested for Acute Contaneous Lupus?
Well.... Those are true relationships goals
I hope you’re doing well! Your kitties are beautiful!
Sasha & Beth you are a blessing in disguise, the empithany of strength, so brave! Keep going Girls,, I'd do the same for my girl too❣️
What an amazing partner she has ❤❤ she obviously loves her and wants to Make sure she is okay ❤❤❤
Sasha you are amazing, you could have walked away but because of the amazing person you are you help the one you love ❤❤
The sanitizer and spray has so much chemical.. I would think that's would add to issue???
Exactly!!
I was thinking the same
what a sweet sweet couple! all my love and support to them :)
You are strong and keep up the determination and perseverance.❤
😊
You are a strong and resilient young woman Beth, and Sasha you are an angel sent to love and care for Beth. We need more kind and loving people like your two in this world. Sending you all hugs and hopes that one day there will be a cure for this condition. No one deserves this. 🫶
i have the same thing beth does, i hope she is doing well :(
I’m allergic to the sun and heat, and also most foods, I can’t tell you how relieved that I’m not alone. Thank you.❤❤
she is so beautiful and strong...! I hope some miracles to happen for you. It is paniful to see such strong and beautiful person suffering too much. May god bless you, and heal your condition. 🙏
She is lucky not to be be allergic to cats. I sadly can't go anywhere near any animal with fur. Spicy foods... I get similar rashes on my face, shoulders, across chest. I hope beth can get better from this.
Wow i have been breaking out in hives for a few weeks but I will not complain again about it
I'm convinced her skin barrier is severely damaged
This reminds me of Ehlers-Danlos with Mast Cell Activation Syndrome.
I wish you would have been around when I was in high school. I had the worst acne of probably anyone in the school. (1,500 students) I tried everything. I know its nowhere near the same, but back then they didnt talk about this stuff, so I felt so much shame. Like I was dirty, or ate poorly (especially chocolate). Your video would have helped me so much--thank you for sharing your openness and confidence!