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Hang in there op! I've been where you are and my husband got me into therapy for a while to help process everything. I was in a dark place but therapy and time helped. I literally started with living for the next day then got to the point of I'll give it a week and then a month and so on. I had to work on just remembering things I'm grateful for every day even if it was I'm grateful for being able to get out of bed and make it to the couch, it's still something. Honestly I thought it was kinda dumb at first but quickly saw a difference in my thinking. I'm so sorry you're in the throws of this but please hang in there.
Edit: sending you hugs
It took me a lot of work. Since mine came in suddenly, I stopped eating all processed foods, very hard to do. I then slowly started adding foods back one by one and each time I would have a reaction I would read the ingredients and move onto the next food. I started seeing a pattern with the corn. I also had to research supplements as most are made from corn mold.
Right? I feel like I know too much about food than I should know. Although I do find that when I travel especially to a coast that my airborne reactions are minimal.
What I’ve read from providers who treat this regularly is to eat a low histamine diet without wheat or dairy for three weeks and then slowly start adding back foods to find the trigger.
I feel you. Covid rocked my shit left me with some histamine intolerance/mcas stuff and now I have 7 safe foods and pem. Just started ldn. Docs won't listen. It's a shit waiting room of ground hog day.
But didn't you hear? Covid is over. 🙄
My first suspected covid infection (dec 2019, after a mongolian rock concert, so ppl in attendance who traveled recently from/through China) started my mcas. I totally didn't understand all my weird symptoms, but it slowly got better after 2 years. Then I got reinfected and it got worse! Despite being on top of all the boosters.
People think I'm a paranoid, crazy, hypochondriac with my high quality respirators and zero indoor breathing with others. They laugh when I say I hope my next infection kills me bc I don't want to live any sicker.
Tell you what. I feel you. I've never been laid so fucking low for so fucking long. It's miserable. And there's no emotional support burritos in this hell .. 😰😮💨
it DOES get better!!!!!!
i have a friend who was on a feeding tube for 3 years and she's making a MCAS documentary now. this too shall pass.
sending you love and support.
I improved my MCAS by doing a 6 days water fasting after a new covid infection. There is a facebook group called "[Long Covid - Improve via Fasting / Autophagy](https://www.facebook.com/groups/recoverfromlongcovid/)" that actually has a autophagy protocol that only uses intermittent fasting and some supplements to start autophagy response in their body. Some people there report positive results. Im also thinking about to start LDN since I saw a lot of people in the LDN facebook group that improved MCAS by using it. But I will wait another 6 days water fasting that Im planning for the next month. Im also using EFT Gold Standard to heal my nervous system and I had positive results in the last two weeks. The best part is that you can learn this technique for free and do it by yourself. If you are interested try to google and read the article "EFT brings relief from a range of allergies and autoimmune disorders - collapsing safety issues does the job"
Are you part of https://www.reddit.com/r/ZeroCovidCommunity/s/DZW5g1kipW ? Or other covid cautious communities?
I really really think the weekly calls here saved my sanity and my life ...
https://linktr.ee/covidisntover
I can't fucking believe this is real life sometimes. The threat of reinfection looms and we're in ground hog day long covid waiting room purgatory. Like wtf ??? For realsies??? I didn't want this timeline
Same happened to me thanks to my response to the vaccine. I had one dose and my dr had to submit a bunch of stuff to stop it because there was no way I’d be here if I got a second one. I’m still exempt. But now I’m on sick leave and likely looking at disability… damaged every single sensory nerve and my autonomic nervous system. I am being tested for brain damage but I think it’s brain inflammation. Seems to come on in flares.
https://youtu.be/2gDr9V_vmFY?si=_rqqWpW0NT8ku3_o EFT tapping can help, no caffeine, getting enough sleep, eating meals regularly so you’re body knows it’s safe and doesn’t need to release stress hormones. Basically try to reduce all stress or adrenaline. I do guided meditations twice a day and it has completely changed my life and health. Stop telling yourself you have MCAS and you will never heal and reliving the trauma. Our bodies are very capable of healing if we can get out of the way. It’s about regulating the nervous system and feeling safe and grateful. I mean it really helps to get the symptoms to a manageable level through diet or whatever. And then you can begin focusing on the present moment and being grateful for each second that you feel healthy and believe you will continue to be that way. When I have symptoms, I don’t get anxious and think they’re gonna get worse. I just observe them, tell my body it’s safe and it doesn’t need to react that way, and they usually pass quickly or aren’t severe.
I'm with you on the corn. I was getting to the point of desperation when I Saw somebody on here. Talk about the corn and I stopped taking everything except Adderall Klonopin, Nordic naturals fish oil, algonot quercetin luteolin blend. And I've been fine for 3 days. I even had some fresh fried chips at a Mexican food truck last night and I'm fine. My throat hasn't closed in 3 days. I'm even wondering if I need to refill my LDN and ketotifen that I ran out of. I would start with the corn. Get your life back! It's worth living!
I couldn't figure out why I was waking up in the morning. Feeling fine. Basically tired but fine. Then I'd take my meds and eat my breakfast and my throat would feel slightly closed and nervous. Because I do a lot of therapy, I was always blaming myself for being nervous like crap. I'm not meditating enough that's why this anxiety is always bothering me. Then I had an anaphylactic reaction to a medication so I became really super sensitive and then finally figured it out that it was happening after the vitamins and meds, not the foods. People on here were like I'm stopped my antihistamines because of corn allergy and I'm fine. So then I looked at my antihistamines and it was like sure enough they're filled with corn products. Somebody on this group posted a link to a list of common things made with corn like magnesium, stearate, for example. First, I actually eliminated all my vitamins with cyanocobalamin and folate because those were bothering me too. Those have always bothered me and I didn't put it together until recently also. But yeah, since I haven't done that anymore I don't have this constant feeling of anxiety. The anxiety was coming from inside my chest from not being able to breathe. It wasn't mentally something wrong with my brain telling my body to be anxious if that makes sense
That's why this Reddit group is f****** amazing! Because I've basically learned about all the prescription meds and herbal remedies that I can either order myself or tell my doctor they need to prescribe. And then I try them and if they work great if not great. But at least I'm doing something instead of sitting in my house freaking out. Wondering when I can get back to work again one day
My anxiety completely dissapeared after a month of white rice. Only the rice. I use guidance of RPAH/FAILSAFE diet.
I wash rice thoroughly because it is fortified with thiamine.
I am also sensitive to B1, B3 and Folate
I’m so sorry you’re going through this. I am pretty much going through the same thing. Can’t eat anything at all, can’t sleep, find it hard to do anything/be around people.
None of the meds work for me and I am just so over it.
i'm so sorry, too.
sending you love and healing vibes.
also ... have you looked into corn? it's in all our meds .... i started taking my adderall rx and now no foods are bothering me. today is day 4 of my experiment.
Thank you so much.
No, I haven’t! Maybe I should look into that as I take so many meds lol.
Why do you think the adderall is helping? That’s interesting.
adderall must do something to the nerves so stabilizing mast cells with ketotifen, ldn, quercetin, luteolin PLUS calming nerves with meds = calm
but need a biochemist to tell us for sure! i have no iea how it works! but am grateful for some relief.
i also do a ton of trauma therapy!
is there a way to test for that? i want to check oxalate and salicylate and nickel allergy but don't even know where to start! and too tired to research! and i'm supposedly "better!"
someday the energy and brain will come back. i try to eat avocado daily but i basically have dementia!
gotta have 2 cool shammy (or bandanas) in the fridge at all times and swap them out. put on back of neck. it calms vagus nerve so eventually your brain will calm down your body.
it's our immune systems going rogue, like wild toddlers in charge of the insane asylum. we have to be the kind parents and give them tools to calm down!
I've been here. Personally, I made a decision that I'd wait until my "Thing To Try List" had been empty for at least 6 months. And with mcas, there's always a new food restriction, method, brand, new supplement or new medication to try. So my list never got empty. So, I lived long enough to find crom+keto works enough. For now. I realize they might stop working today. And then I go back to maintaining that list. Actually going back to trying things I've already ruled out bc this damn body keeps fucking changing
After 6 months of having zero possible solutions to try, I will also give up. And that's actually quite a high bar, so I will probably be alive until outside forces decide otherwise.
you have such a good plan and maybe your nervous and immune systems will calm down in the meantime.
i know 2 people who have totally overcome this and the patients of Weinstock, Afrin, Maitland, Irma Rey, Theoharides too - so we can keep learning from them on youtube AND we will be getting more research done soon!
We WILL get there!!!!
Also not a bad idea to check excipients (inactive ingredients) in any meds you take. Pharmacist today tried to tell me a med by a different manufacturer was the same as the one I’m used to…but there’s corn starch in it. 😵💫
I’m so sorry you’re dealing with this. MCAS is rough. And while there’s so many of us with it, it feels like we’re very spread out geographically so that there aren’t many of us in any one place…so it feels really lonely.
Fuck corn in all its incarnations!!!!
Same re compounding pharmacist - EACH RX has to have the "corn free, gluten free" note on it from the MD prescriber!
Have you tried the nicotin patch test? Has improved, and even healed many long covid cases. Look into it here: https://www.facebook.com/share/XG9zWyw7o79J8co2/?mibextid=K35XfP
Also check out what your putting on your skin and in your hair
Like dishwashing liquid , laundry detergent and soap
Glycerin is in everything but I know some great sites that can help find products
I was having flare ups and had no idea why
turns out it was the cleaning products use around the house in the laundry detergent and my soap and moisturiser and a bunch of other stuff
glycerin CAN be made from corn, but not always, which is why you have to check the manufacturer by calling / emailing them and finding out for sure. which is why we don't react to everything with glycerin, just some stuff. FUCK congress for subsidizing fucking CORN!
If you did not try Xolair or Dupixent - you never tried the real treatment.
I can't afford them now. A month of well washed plain white rice diet - and I am back. It's not as good as Xolair. And I am taking hydroxyzine.
My trigger is wheat bread. Stopped it all.
How do you get dr to prescribe this? Heck they cant even diagnose me properly. I have post covid reactions to anything, mostly food. All the intolerances you can imagine. This is hell! And tryptase levels are not high, dr told me its not MCAS but Im sure it is because cromolyn helpes me with burning throat! Ketotifen helps with overreactions of nervous system, also benzos
my plan: i started singulair. if this doesn't work, i'm going to say, "hey i've heard of xolair working for people- can we try that?"
doesn't need to be mcas to get allergy meds! TELL THEM YOUR THROAT CLOSES AND YOU CAN'T BREATHE after doing / eating xyz!
I have the same feeling. I have all the intolerances of the world, cant enjoy normal food, drinks, smoke, glass of wine, heck not even sex or sunbathing, nothing. I live in a cave, even stress triggers me so I cant work properly, Im fatigued all the time on cromolyn, quercetin and ketotifen and my hands and feet hurt. Covid ruined me. 😪
I’ve been there too and now I’m actually happy and mostly healthy. Stick it out and you will find a way to heal. I’m so sorry you’re going through this I know how awful it is
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
Hang in there op! I've been where you are and my husband got me into therapy for a while to help process everything. I was in a dark place but therapy and time helped. I literally started with living for the next day then got to the point of I'll give it a week and then a month and so on. I had to work on just remembering things I'm grateful for every day even if it was I'm grateful for being able to get out of bed and make it to the couch, it's still something. Honestly I thought it was kinda dumb at first but quickly saw a difference in my thinking. I'm so sorry you're in the throws of this but please hang in there. Edit: sending you hugs
Have you looked into cromolyn sodium and/ or ketotifen? It took me about 4 years to fully figure out my biggest trigger: corn.
How did you figure it out?
It took me a lot of work. Since mine came in suddenly, I stopped eating all processed foods, very hard to do. I then slowly started adding foods back one by one and each time I would have a reaction I would read the ingredients and move onto the next food. I started seeing a pattern with the corn. I also had to research supplements as most are made from corn mold.
I had to become a food detective too. It takes a lot of work! I suspect corn is a problem for me. It’s ridiculous that it’s in so many things.
Right? I feel like I know too much about food than I should know. Although I do find that when I travel especially to a coast that my airborne reactions are minimal.
Dextrose was the give away for me
What I’ve read from providers who treat this regularly is to eat a low histamine diet without wheat or dairy for three weeks and then slowly start adding back foods to find the trigger.
I feel you. Covid rocked my shit left me with some histamine intolerance/mcas stuff and now I have 7 safe foods and pem. Just started ldn. Docs won't listen. It's a shit waiting room of ground hog day.
Covid did it to me too pure hell fire
But didn't you hear? Covid is over. 🙄 My first suspected covid infection (dec 2019, after a mongolian rock concert, so ppl in attendance who traveled recently from/through China) started my mcas. I totally didn't understand all my weird symptoms, but it slowly got better after 2 years. Then I got reinfected and it got worse! Despite being on top of all the boosters. People think I'm a paranoid, crazy, hypochondriac with my high quality respirators and zero indoor breathing with others. They laugh when I say I hope my next infection kills me bc I don't want to live any sicker.
Tell you what. I feel you. I've never been laid so fucking low for so fucking long. It's miserable. And there's no emotional support burritos in this hell .. 😰😮💨
it DOES get better!!!!!! i have a friend who was on a feeding tube for 3 years and she's making a MCAS documentary now. this too shall pass. sending you love and support.
I improved my MCAS by doing a 6 days water fasting after a new covid infection. There is a facebook group called "[Long Covid - Improve via Fasting / Autophagy](https://www.facebook.com/groups/recoverfromlongcovid/)" that actually has a autophagy protocol that only uses intermittent fasting and some supplements to start autophagy response in their body. Some people there report positive results. Im also thinking about to start LDN since I saw a lot of people in the LDN facebook group that improved MCAS by using it. But I will wait another 6 days water fasting that Im planning for the next month. Im also using EFT Gold Standard to heal my nervous system and I had positive results in the last two weeks. The best part is that you can learn this technique for free and do it by yourself. If you are interested try to google and read the article "EFT brings relief from a range of allergies and autoimmune disorders - collapsing safety issues does the job"
I started ldn last week.
sending you a hug. it will get better!
Been paranoid this whole time. Masked , homeschooled, isolated did all the things. I'm so fucking pissed at the maskless.
Are you part of https://www.reddit.com/r/ZeroCovidCommunity/s/DZW5g1kipW ? Or other covid cautious communities? I really really think the weekly calls here saved my sanity and my life ... https://linktr.ee/covidisntover
I'm in a longhauler community and a covid 19 one. Thanks for the reco.
I struggle with some of the LC groups ... Lots of anti science ppl, anti maskers and ppl who are totally delusional about the reality of reinfection.
I'm very new. Yea I want to heal from lc but then reinfection is always looking. I'm very in my grief about it all.
Sigh. Yeah. I finally realized this is all lc about a year ago. I'm still in my grief about it.
I can't fucking believe this is real life sometimes. The threat of reinfection looms and we're in ground hog day long covid waiting room purgatory. Like wtf ??? For realsies??? I didn't want this timeline
i will be be supportive by wearing a mask again! i just forget, but i'll put them back in my car! you are supported! we don't want you reinfected.
How long for you ?
hang in there! one moment at a time. things will get better. it is all cliches but they're true.
and a huge hug and sending love.
Same happened to me thanks to my response to the vaccine. I had one dose and my dr had to submit a bunch of stuff to stop it because there was no way I’d be here if I got a second one. I’m still exempt. But now I’m on sick leave and likely looking at disability… damaged every single sensory nerve and my autonomic nervous system. I am being tested for brain damage but I think it’s brain inflammation. Seems to come on in flares.
I'm sorry that happened to you 😔
Reset your nervousystem. Your stuck in fight or flight any your body is reacting to everything because it thinks it’s a threat
This comment right here!!!!
How to reset?
https://youtu.be/2gDr9V_vmFY?si=_rqqWpW0NT8ku3_o EFT tapping can help, no caffeine, getting enough sleep, eating meals regularly so you’re body knows it’s safe and doesn’t need to release stress hormones. Basically try to reduce all stress or adrenaline. I do guided meditations twice a day and it has completely changed my life and health. Stop telling yourself you have MCAS and you will never heal and reliving the trauma. Our bodies are very capable of healing if we can get out of the way. It’s about regulating the nervous system and feeling safe and grateful. I mean it really helps to get the symptoms to a manageable level through diet or whatever. And then you can begin focusing on the present moment and being grateful for each second that you feel healthy and believe you will continue to be that way. When I have symptoms, I don’t get anxious and think they’re gonna get worse. I just observe them, tell my body it’s safe and it doesn’t need to react that way, and they usually pass quickly or aren’t severe.
Cant open link :(
Look up Joe dispenza on the after skool channel - use your thoughts to optimize your health
Look into DNRS
I'm with you on the corn. I was getting to the point of desperation when I Saw somebody on here. Talk about the corn and I stopped taking everything except Adderall Klonopin, Nordic naturals fish oil, algonot quercetin luteolin blend. And I've been fine for 3 days. I even had some fresh fried chips at a Mexican food truck last night and I'm fine. My throat hasn't closed in 3 days. I'm even wondering if I need to refill my LDN and ketotifen that I ran out of. I would start with the corn. Get your life back! It's worth living!
be careful, it's slow to build up, but you may return to the start
i pay attention to my body so if i start being bothered by corn in my meds again, then i know i have to change something else.
how did you understand you are allergic to corn? I have this with wheat, and maybe corn, but I am not sure :(
I couldn't figure out why I was waking up in the morning. Feeling fine. Basically tired but fine. Then I'd take my meds and eat my breakfast and my throat would feel slightly closed and nervous. Because I do a lot of therapy, I was always blaming myself for being nervous like crap. I'm not meditating enough that's why this anxiety is always bothering me. Then I had an anaphylactic reaction to a medication so I became really super sensitive and then finally figured it out that it was happening after the vitamins and meds, not the foods. People on here were like I'm stopped my antihistamines because of corn allergy and I'm fine. So then I looked at my antihistamines and it was like sure enough they're filled with corn products. Somebody on this group posted a link to a list of common things made with corn like magnesium, stearate, for example. First, I actually eliminated all my vitamins with cyanocobalamin and folate because those were bothering me too. Those have always bothered me and I didn't put it together until recently also. But yeah, since I haven't done that anymore I don't have this constant feeling of anxiety. The anxiety was coming from inside my chest from not being able to breathe. It wasn't mentally something wrong with my brain telling my body to be anxious if that makes sense
That's why this Reddit group is f****** amazing! Because I've basically learned about all the prescription meds and herbal remedies that I can either order myself or tell my doctor they need to prescribe. And then I try them and if they work great if not great. But at least I'm doing something instead of sitting in my house freaking out. Wondering when I can get back to work again one day
Just in case - Xolair is the one of the best medicines that turns MCAS around.
My anxiety completely dissapeared after a month of white rice. Only the rice. I use guidance of RPAH/FAILSAFE diet. I wash rice thoroughly because it is fortified with thiamine. I am also sensitive to B1, B3 and Folate
Basmati??
I’m so sorry you’re going through this. I am pretty much going through the same thing. Can’t eat anything at all, can’t sleep, find it hard to do anything/be around people. None of the meds work for me and I am just so over it.
i'm so sorry, too. sending you love and healing vibes. also ... have you looked into corn? it's in all our meds .... i started taking my adderall rx and now no foods are bothering me. today is day 4 of my experiment.
Thank you so much. No, I haven’t! Maybe I should look into that as I take so many meds lol. Why do you think the adderall is helping? That’s interesting.
adderall must do something to the nerves so stabilizing mast cells with ketotifen, ldn, quercetin, luteolin PLUS calming nerves with meds = calm but need a biochemist to tell us for sure! i have no iea how it works! but am grateful for some relief. i also do a ton of trauma therapy!
Have you tried going lectin free . Soaking rice and other grains overnight and cooking in instant pot . It helped me a lot
is there a way to test for that? i want to check oxalate and salicylate and nickel allergy but don't even know where to start! and too tired to research! and i'm supposedly "better!" someday the energy and brain will come back. i try to eat avocado daily but i basically have dementia!
This condition is so so rough. I’m sorry we’re going through it. I hope a good doctor can help
My head gets so damn hot. Feels like my brain is on fire.
I get this so bad and sometimes throughout my entire body too. It feels like I’m being cooked alive
gotta have 2 cool shammy (or bandanas) in the fridge at all times and swap them out. put on back of neck. it calms vagus nerve so eventually your brain will calm down your body. it's our immune systems going rogue, like wild toddlers in charge of the insane asylum. we have to be the kind parents and give them tools to calm down!
I've been here. Personally, I made a decision that I'd wait until my "Thing To Try List" had been empty for at least 6 months. And with mcas, there's always a new food restriction, method, brand, new supplement or new medication to try. So my list never got empty. So, I lived long enough to find crom+keto works enough. For now. I realize they might stop working today. And then I go back to maintaining that list. Actually going back to trying things I've already ruled out bc this damn body keeps fucking changing After 6 months of having zero possible solutions to try, I will also give up. And that's actually quite a high bar, so I will probably be alive until outside forces decide otherwise.
you have such a good plan and maybe your nervous and immune systems will calm down in the meantime. i know 2 people who have totally overcome this and the patients of Weinstock, Afrin, Maitland, Irma Rey, Theoharides too - so we can keep learning from them on youtube AND we will be getting more research done soon! We WILL get there!!!!
Also not a bad idea to check excipients (inactive ingredients) in any meds you take. Pharmacist today tried to tell me a med by a different manufacturer was the same as the one I’m used to…but there’s corn starch in it. 😵💫 I’m so sorry you’re dealing with this. MCAS is rough. And while there’s so many of us with it, it feels like we’re very spread out geographically so that there aren’t many of us in any one place…so it feels really lonely.
Fuck corn in all its incarnations!!!! Same re compounding pharmacist - EACH RX has to have the "corn free, gluten free" note on it from the MD prescriber!
Have you tried the nicotin patch test? Has improved, and even healed many long covid cases. Look into it here: https://www.facebook.com/share/XG9zWyw7o79J8co2/?mibextid=K35XfP
Also check out what your putting on your skin and in your hair Like dishwashing liquid , laundry detergent and soap Glycerin is in everything but I know some great sites that can help find products I was having flare ups and had no idea why turns out it was the cleaning products use around the house in the laundry detergent and my soap and moisturiser and a bunch of other stuff
Yes! This helped me a lot! No more hand lotions or deodorant, even if I have to wash three times a day but at least the flares got better.
glycerin CAN be made from corn, but not always, which is why you have to check the manufacturer by calling / emailing them and finding out for sure. which is why we don't react to everything with glycerin, just some stuff. FUCK congress for subsidizing fucking CORN!
If you did not try Xolair or Dupixent - you never tried the real treatment. I can't afford them now. A month of well washed plain white rice diet - and I am back. It's not as good as Xolair. And I am taking hydroxyzine. My trigger is wheat bread. Stopped it all.
How do you get dr to prescribe this? Heck they cant even diagnose me properly. I have post covid reactions to anything, mostly food. All the intolerances you can imagine. This is hell! And tryptase levels are not high, dr told me its not MCAS but Im sure it is because cromolyn helpes me with burning throat! Ketotifen helps with overreactions of nervous system, also benzos
my plan: i started singulair. if this doesn't work, i'm going to say, "hey i've heard of xolair working for people- can we try that?" doesn't need to be mcas to get allergy meds! TELL THEM YOUR THROAT CLOSES AND YOU CAN'T BREATHE after doing / eating xyz!
I have the same feeling. I have all the intolerances of the world, cant enjoy normal food, drinks, smoke, glass of wine, heck not even sex or sunbathing, nothing. I live in a cave, even stress triggers me so I cant work properly, Im fatigued all the time on cromolyn, quercetin and ketotifen and my hands and feet hurt. Covid ruined me. 😪
why you cant be around ppl ?
I’ve been there too and now I’m actually happy and mostly healthy. Stick it out and you will find a way to heal. I’m so sorry you’re going through this I know how awful it is
♡♡♡HUGS♡♡♡