Added: 2 months ago
From: Dottilicious
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  • I have to keep using my epipen three times in the last two weeks. I am getting more and more frusterated. I take four zyrtec a day an immune suppressant antimalarial drug due to the sjogrens and other meds. I also take steroids but is not working just on pain for sjogrens.

  • I have had this since nine or ten and only now getting diagnosed there is a possibility my son may have it. I cannot seem to get rid of my swelling everywhere and weight gain heaviness to the point i cannot lift legs and muscle weakness etc. what meds are you on?

  • thanks for the information. And to share with the people. You are a very strong woman. I have HAE, and i was suffering the last 20 years this disease.I´m 39. I live in Mexico and i don´t have too much options to be medicated. Now i am taking DANAZOL 100 mg, and feeling asintomatic. i hope you´ll feel much better with the new drugs. 

  • thank you soo much for this video, i have just been diagnossed with this illness, i have had anavolectic shock 8 times in three weeks.

    Finally i was pescibed prednezone and the swelling is subsiding,I go to the specialist in 4 days,hoping for some sort of answers.

    One thing i would like to ask you is if you still work,I am a truck driver and just got put on Employment Insurance Sick Leave cause i never know when an attack will come on.

    feel free to inbox me with any advise. thx again.

  • @viper11blue do you have Allergic angioedema? or herditary? thanks

  • Thank you for this video! You always make me feel like the world's a brighter place, whenever you talk. That's so crucial. Lots of love. xo

  • you can use a birth protection injection (or do you want to get pregnant) that keeps your menstruation away

  • Suzi you are amazing!! Thank you very much

  • Wow - kan mij niet voorstellen hoe lastig dit (vaak) moet zijn! Zelf heb ik erg hooikoorts en ook allergisch voor veel fruit, noten en ook medicijnen maar na zoveel jaar weet ik wel waar ik niet tegen kan. Voor mijn hooikoorts gebruik ik het gehele jaar door Xyzal - nadat mjin allergoloog 4 verschillende soorten antihistamine heeft voorgeschreven, blijkt deze bij mij al een aantal jaar heel goed te werken en heb ik nauwlijks extra medicijnen nodig. Misschien is Xyzal een andere optie voor je?

  • It's so true that was can't just avoid the unknown that makes us sick.

    It's strange when people ask "Are you a cat or dog person?" I always say "I only like cute photos of them and not the real thing".

  • There are no words to say how much I love you right now.

    Everyone else has said exactly what I feel - that you're inspiring and brave and AWESOME - and I am so incredibly proud of you! I feel so lucky to have both you & Russ in my life <3

    Really well done for doing this video, I hope it helps a lot of people feel less alone.

  • Hey sweetheart! Thank you for sharing about your consition. Awareness and advocacy are so important! Much love and be well, precious one. Xoxox

  • I have occasional skin reactions that cause my face to swell up and become quite itchy and painful/inflammed, but watching your video has really put things in perspective for me and taught me to stop feeling sorry for myself and insecure every time I get a reaction. I am truly inspired by your fighting spirit and grace, and just subscribed. Thanks so much for being such a strong woman and an inspiration!

  • I love watching your video's. I have different inflammatory conditions, much much less severe than yours, but I have a similar challenge in being allergic and sensitive to many foods and chemicals and never knowing what may trigger a reaction. Thank you for sharing your experiences. Your strength always serves to humble me and make me smile. xxxxx

  • you are awesome!

  • Ik vind jouw echt een kanjer!!!!!!!!!!!!!!! Je bent een geweldige persoon.

  • @Wittje84 Aww wat lief! Dank je wel! :)

  • Thanks for sharing, you are an amazing woman! God bless you, SuzyXXX

  • ik vind het erg jammer dat zo'n prachtige lieve meid alsjij met zo'n vervelende ziektes moet leven :(

  • Very inspiring :D you cope so well with this condition, and you bring a lot of awareness to people who were, prior to this video, unaware :) So good job! xx

  • You're an inspiration Suzy!! We all love you!!!

  • you are strong, God bless you!

  • You're such a strong woman, I'm inspired by your courage Suzy. Hugs!

  • @glintzy Thank you so much, Aimee!! That means a lot to me :)

  • Dang girl...you got me all emotional here. I dont suffer from angioedema, but 3 years ago I acquired lymphoedema. It came out of the blue and only recently I kind of came to terms with it. But it is difficult sometimes to make people understand what you are going through.I noticed it has made me stronger, but sometimes I still get major setbacks. Today was a bit of a bad day, so thanks heaps for this vid. <3

  • Proud that you can do it.

  • Hi Suzzy, thank you the video. I kind of heard of Angioedema but was ot sure what it was. I love love the video from 11 minute onward. I have seen that in other people, illness brought them to be better with themselves and with others. It is therapeutical watching you. Kidest regards from Spain

  • You truly are a beautiful person inside and out x

  • God bless you!

  • I think this video con be very helpful for those who just got confronted with the diagnosis and are now afraid that their "good life" is over now. Well done!

  • thanks for sharing! hugs!

  • You did an excellent job with this video! Thanks for sharing.

  • Oops, sorry for the typing mistake! It must be 'fullest' of course!

  • Thanks for sharing such private insights of your life with the illness, Suzy! Never stop being happy and living your life to the fillest as much as you can! 3

  • A big hug to you Suzy! You are beautiful. Kudos for staying positive and strong. Thank you for sharing your story . Love your channel.

  • you are amazing Suzy :)

  • You are such a strong and kind hearted girl! We really don't know how many great people or things are around us sometimes, so thank you for pointing that out! You are so down to earth and genuine, it makes me happy to know that there are people like you out there! I love how you continued to stay positive during hard times and you really inspire me to overcome challenges in my life too! :)

  • You are so Strong ^.^ Keep on being yourself as you are beautiful just the way you are :D

  • God bless <3!

  • Love you Suzy! You are such a strong woman, you really are an inspiration, my inspiration!!! I just realized so many things (deep thoughts)... I wish you all the best, keep being the positive person you are!!! XOXO

  • Thankyou for another very informative video Suzy! Your a very inspiring woman my dear.

    You always have a smile on your face despite what you go through and that smile of yours makes the rest of us smile too, so that's pretty awesome.

    You seem like a strong gal, even though I'm sure you have very down days because of what you go through which is extremely understandable.

    Thankyou for bringing a little bit of sunshine to your subbies lives!

    YOU ARE AWESOME! HEHE!

    Cassia

    xxxxxxxxxx

  • Ik ben er stil van wat een verhaal en thx voor je positieve instelling. Ik heb ook nog vaak moeite met mijn diabetisch en vorig jaar moest ik insuline gaan spuiten weer een stap achteruit voor mijn gevoel. Toen heb ik 2 weken lopen huilen en vond ik mezelf zo zielig . En nu een jaar later ben ik zoo blij voel me stukken beter en ik ga er gewoon voor. Bedankt je bent echt een mooi mens

  • I love your positive attitude! It shows in all of your videos.

    I have two friends/acquaintances with the same sometimes-debilitating illness. One has a positive attitude and does as much as she can with her life. She seems to be very happy, and when spending time with her, I never think of her illness. The other mentions her illness or how it has ruined her life in every conversation. She has allowed it to limit her life, and her perspective on life saddens me. Stay positive, everyone!

  • You are so beautiful and so strong, Suzy. Thank you for sharing <3

  • @cheesestreet Aww thanks Chloe! *big hug*

  • Suzi , I dont laugh about the pic!! thats not fun ...but nobody is pervert... i always know wen you are strong and a warm person X ( i'm not good at English XD

  • @GibraRo Don't worry! Your English is ok! :) Thank you <3

  • You're certainly right when you say illness can change you for the best or the worst. You're a radiant person, you litterally shine from the inside and I wish you the best.

  • Suzi, thank you for your explanation and this informative video. I really admire how you gracefully explains your conditions to us.

  • @agram47 Thank you :) I find it so incredibly important to spread awareness about my two illnesses, as they are so unknown. Awareness is the first step to creating better understanding :)

  • i really admire you.

    hugs!

  • I really admire you! Xoxoxo

  • wow suzy i admire you!:) xoxo

  • /salute /bow /wave

  • @zzzap78 /purr Hahahaha xD

  • wow suzy! I never knew about this illness, thanks for sharing. you're really strong, and it's so heart warming to know that all your videos you make, you put in all you effort into it. :') May God bless you in many ways.

    P.S. I think you look and sound soo lovely. :) Would love to meet you in person some day <3

  • *Hugs*

    I really admire you!

    Just that.

    x

  • I knew nothing about Angioedema and I respect you very much

    for how well you handle the illness. You are such a beautiful person

    inside and out! take care Suzy! *hugs*

  • hugs! you are a strong girl!

  • Ik heb je net even een PB gestuurd.

    Ik wou je iets vertellen wat ik liever niet hier zet. Hope you don't mind.

  • Great video, Suzy. I'm sure it'll really help someone *hugs* :)

  • You are such a strong contagious person and you do it all with such grace and dignity! Truly inspiring! ^_^ that's an utter nightmare about the car causing problems! So crazy, guess you just never know. Stay strong & I hope they find better treatments and a cure for you! xoxo

  • You are a strong lady!

  • I really admire you so much. You have so much to deal with and STILL manage to stay happy and strong! I really admire that. Please stay strong! :) xxx

  • Holy crap Suzy, you have so much on your plate! You are so positive and lovely all the time, and basically you're amazing for enduring it. That's all I can say!

  • You made me looked up to you so much! Please continue to stay brave and positive like this, and take very good care of yourself too! Remember to cherish the people around you and live everyday to its best! Stay strong and happy! (:

  • Ur so brave going through what ur going through w/such a positive spirit.

    As for the "friend" who told u that no one is ever going to want u....if I were u I would really question whether that person is really a friend or someone who likes to put ppl down. I know b/c I had a "friend" like that...she was always putting me down w/comments like the one your friend said. A real friend cheers a person up & makes them feel positive about their life, not negative.

  • @natememart Oh no no! My friend has a chronic illness too and she meant that she feels no one will ever want HER. She wasn't talking about me :) Sorry if I confused you!

  • @Dottilicious Oh! It's ok. I understand now. Thanks! =)

  • but like you said we only get one life so we should stop feeling sorry for ourselves and live! But it's so hard to have that mentality when you feel like a freak, I tried to avoid social situations at all cost because I felt so ugly and I can't shake those negative thoughts whenever I do have a flare-up. Thanks for making this video, you are a brave woman and a lovely person :) x

  • Did your mum have you during birth naturally or via c section? I was told that eczema can be avoided passing on to the child possibly by opting for c section.

    U are one strong lady! Love ya!

  • @TTTlois Naturally :) My mum had eczema too as a child and she has asthma. I've just been unlucky when it comes to inheriting things from my parents. I inherited my dad's big nose and my mum's sensitivities hahahaha! xD

  • It's nice to see that you have such a positive outlook on life. I'm such a pessimist I think i picked it up from my dad who is so negative! But yet my husband is the opposit...anyway, what I wanted to say is that many people (including myself) take their health for granted. I have severe eczema on my face which started 3 years ago when my whole face swelled up for 2 months, i got so depressed I didn't wana live anymore.

  • You're the sweetest and the bravest person I ever met on YT. When I was your age, I was at my worst moment, because of a muscle desease. Now, 4 years later, also by "trial and error" with food, medication and exercise, I am much, much better. In a way that even my neurologist doesn't believe that it's possible. I really hope that, as for me, your health problems will also tend to go away, or at least get less frequent with time. Thank you so much for sharing, you are a true inspiration!

  • (cont) but you're the proof that self-pity never leads anywhere. You really are (of course this is an impression, I don't know you personally, but still...) an extremely beautiful young woman, and your videos just reaveal serenity and humility and grace. Chronicle diseases really put you throguh hell just because you never know what to expect and also because most people just don't understand. You are an example! Also, congrats on your engagment. Wish you the best and keep on like this :) x

  • @Nykteri Thank you so much!! :)

  • First, I found your makeup videos (super fair skin companion!) and then subscribed because I really liked them; only after a while I discovered your vid about dystonia, and I was just astonished as I would have never ever suspected anything, and I suddenly appreciated your tutorials even more knowing the dedication behind them. Now I saw this and I had to comment: I admire you for how greatly you're dealing with all this. Of course there are some low moments when you just ask yourself why me?but

  • Thank you for this video, it's very helpful. Actually i have been having hives (i believe this what they are from the description) for over 6 months now (the birth of my son screw my immunity real bad) and actually i am going to the dermatologist today. If it weren't for this video i would have forgotten that actually i too had swallow lip twice, eyelid and fingers. Must mention those too. Although your exterior may look fragile you have a very strong spirit. Hwaiting! :D

  • awwww that is terrible... You are an inspiration!

  • Luckily I'm not allergic to many things but I do know what it is like to live with chronic illnesses. Or wel, 'handicaps'. You are in inspiration for me, to look at things in a different way. Not always easy...

    And ugh on the boyfriend part... I am about to give up :')

  • @sistyria hey hey hey, don't give up! you will soon find your prince charming!

  • @sistyria Don't give up! You're a beautiful person miss Daisy :) The right guy WILL come along :) I really believe that!

  • i admire your strength and courage. keep on fighting!

    also, your tone of voice and calmness made it seem like you were talking to a friend : ).

  • @monochromemanett Aww! Yeah, when I record a video, I always pretend that I'm talking to a friend through the lens so that I feel more comfortable talking to a camera haha xD

  • You are so inspiring and beautiful, inside and out! I wish you the best in finding a treatment plan that works for you! I'm curious, once you have an angiodema attack, how long do they last?

  • @portlandjetaime Thank you :) And to answer your question, it varies. An eyelid swelling takes a couple of days to subside, whereas a lip swelling usually only lasts a day/day & a half, etc.

  • so sorry you are dealing with all of this!

  • Suzi you are so strong!! T_T Big hugs~~

  • @queerpinkfish Thank youuuu!! <3

  • this video was so touching! recently, i went to an allergist and i found out that I'm allergic to like flowers and a lot of trees and moss and dust and pollen and all things that you find outside. I've been having really bad hives and all that. But this video really inspires me to stay positive :) Love you suzie!

  • @TiffanysCorner1 That really sucks :( Especially because it's so difficult to avoid dust and pollen and such! Unless you start wearing a hazmat suit :P Seriously though, I feel your pain! Keep smiling!

  • Sorry, I wanted to write "we panic", no idea why I wrote "with" ;P

  • @MissNimue84 No problem, I understood what you meant ;)

  • Have you tried a diary? (what you eat, drink & do all day) and see what you're triggers are? (like menstruation)

    thanx 4 sharing :-)

  • @Missozark Yeah, I have :) I've tried that several times and I did find out a couple of things through that (like red paprika for example), but since I still get Angioedema, I obviously didn't find everything haha xD

  • @Dottilicious oh well, I understand that it's very complicated :-s you can avoid some things now but it will still be hard to avoid everything of course..

    all power to you!! xxx

  • Thank you for sharing, that makes realize how many times with panic for really silly things!!!

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