DAY IN MY LIFE- what it's like having a rare disease

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  • Опубліковано 27 гру 2024

КОМЕНТАРІ • 86

  • @rmjames83
    @rmjames83 6 років тому +3

    I’m glad you feel safe...it’s huge for warriors that deal with chronic illness, and is really vital. I’ve had so much go wrong with my chronic issues, and problems that they missed when I’ve been in hospital/Doctor’s appointments, which consequently, caused further issues-I get really anxious and don’t feel safe when I’m at the hospital-it’s hard for me to “manage”-you are superhuman, awesome and amazing!!!-don’t ever think ur not!! I’m thinking of you!! Stay strong and we are here for u!!!!

    • @MaggieClaydon
      @MaggieClaydon  6 років тому

      Stay strong !!!! ❤️❤️❤️❤️❤️❤️

  • @guitarlearningtoplay
    @guitarlearningtoplay 7 років тому +6

    I've have lived in a bed for 6 years now. It's just gotten worse over time so I feel ya. I don't have much of a life, just eating, watching movies, talking to the friends I have left, being on my iPad. I help a lot of people with all that I learned over the years. I run a lot of Illness groups on UA-cam

  • @dereckcumpton3080
    @dereckcumpton3080 6 років тому

    Somehow I came across you and your social media. I have watched a couple of your videos and I just wanted to say that you are such a beautiful person. You have such a great attitude and positive outlook on life. Keep sharing your journey as you have a purpose and you truely do help people. I cannot imagine what you have had to endure in your life but you will accomplish great things in this world!

    • @MaggieClaydon
      @MaggieClaydon  6 років тому

      Thank you. Thank honestly is so sweet!

  • @ElisabethSeagull
    @ElisabethSeagull 8 років тому +13

    Stay strong beautiful! You deserve to live an amazing, healthy life and I'm sure that everything will be alright and all your dreams and travel plans will come true! You helped me so much when I was completely alone, dying in bed and now I'm the healthiest and happiest I've ever been, it's just insane! You deserve happiness and I'm praying for your health. ❤️

    • @MaggieClaydon
      @MaggieClaydon  8 років тому +2

      Than you love! But I am so happy and actually tearing up at the fact that I was actually able to be there for you when you needed it. I am always here for you and I love you! You are so beautiful and fb message me anytime!

    • @ElisabethSeagull
      @ElisabethSeagull 8 років тому +1

      ❤️❤️❤️

    • @jangrezk.mujahid1512
      @jangrezk.mujahid1512 7 років тому +1

      Louísa S .... Nice

  • @BrodieBr0
    @BrodieBr0 6 років тому

    I have Chiari malformation, spina bifida, multiple concussion syndrome, and a few other chronic illnesses. What I love about your vlog is exactly how I try to live....I may have these ''rare diseases'' but they rarely ''have'' me. I love how you try to live your life to the fullest, keep doing that and keep being the awesome Maggie that you are.

  • @SreeramReddyB
    @SreeramReddyB 6 років тому +2

    You don’t need makeup, Maggy. You’re are naturally beautiful.

  • @billhansen2786
    @billhansen2786 6 років тому

    Sorry to hear about your illness. I admire you for your positive attitude. Do not worry about missing college time. Just stay positive and your life will be ok.

    • @MaggieClaydon
      @MaggieClaydon  6 років тому

      Thank you so much you are too sweet!

  • @philip6354
    @philip6354 5 років тому

    Maggie just accept "it's part of life" be strong and courageous and stay positive always. All the Fans Love you. You are Special, Unique and Uncomparable. 😘

  • @alexhasyn3403
    @alexhasyn3403 6 років тому

    Your a strong girl prayers going out for you. Thank you for sharing your life story.

  • @kaceystyles8547
    @kaceystyles8547 8 років тому

    You are honestly such a strong and beautiful soul, despite all the news that you got given you still kept positive and still had a smile on your face and continued on with the vlog. I honestly can't imagine what you are going through but I know what it's like to have endless amount of doctors apps and health issues which people don't understand because they physically can't see it. You are so brave, and I hope you have an amazing weekend. Never hesitate to inbox me on facey or dm me on insta as we are friends on both as I am always always always here for you and would love to talk too you! You're never alone, sending you so much love and positive vibes xoxo -Katie.

  • @SreeramReddyB
    @SreeramReddyB 6 років тому +2

    Stay strong, beautiful!! I have few health problems as well ever since my birth. Just need to stay mentally strong, remembering one thing will help feel better that ‘you are not alone with such problems.’
    God doesn’t give instant solutions, God shows paths, you just need stay positive & choose right path.
    All the best for your recovery & health. Hope you get really well soon.

  • @IzzyKDNA
    @IzzyKDNA 6 років тому

    Loved watching your video. I have EDS and POTS too (as well as gastroparesis), and it can sometimes feel like the hospital has become my home because of continuous doctors appointments. Wish you the best of luck with your health!

    • @MaggieClaydon
      @MaggieClaydon  6 років тому +1

      I have CMT4C, POTS, EDS, and a variety of others so Its nice to know im not the only one who feels like at! I hope your have amazing days ahead of you! I would love to talk more! message me on instagram @maggieclaydon

    • @wonderlandalice943
      @wonderlandalice943 6 років тому

      I have a Chiari Malformation type 1, POTS, EDS and gastroparesis and it does suck sometimes because you can be young and carefree and I know it sucks but it’s my reality and I had to determine that my new normal may not be what I wanted but it’s all I have and I will keep moving forward. Good luck

    • @ericdunlap7701
      @ericdunlap7701 6 років тому

      Lovely young lady. Will pray for u.

  • @Emacauley511
    @Emacauley511 7 років тому +1

    What is the rare condition called?

  • @Rtytanicj
    @Rtytanicj 6 років тому

    I feel u girl! I have a bunch of chronic things and chronic pain.

  • @zencontroller
    @zencontroller 6 років тому

    i really feel sorry your going through this.... big hug... hope your ok...

  • @rm-nelson1256
    @rm-nelson1256 6 років тому +8

    Maggie, your so young to MS, I'm truly sorry I know pain believe me, but I'm 71ys old, I got somethig they don't know they say I have fibromyalgia, osteoporosis, arthritic arthritis, ect,etc and this something else tht they don't know, it's a domino problem with me,
    So I'm sooo sorry to read this bc your so young , I will pray for you. GOD BLESS YOU IN JESUS Name❤❤❤

  • @Freddy.v1
    @Freddy.v1 7 років тому +8

    You have beautiful eyes and very pretty keep it up! Youll get very far 👌🏼

  • @renzocence
    @renzocence 7 років тому +2

    Hey thanks for sharing to get this more know for the people because is really hard to diagnosticate it right! A big hug from Argentina!!!

  • @shahbaziqbal4215
    @shahbaziqbal4215 7 років тому +3

    You are a brave girl, i hope that you'll over come on this disease

  • @thomamanfred185
    @thomamanfred185 5 років тому

    take a look for Hartmut fischery DMSO maybee your Pain is from nerved,i think ,
    also vitamin d3 vitamin d2 combination from mr Robert Franz is location my interrstet wich is lot of haling nervs and ractivation cells.

  • @OTHERVERSETCG
    @OTHERVERSETCG 8 років тому +1

    I'm falling asleep you posted this. I'm listening to you talk about yourself and WOW. you seem so confident. I love that. I haven't finished the video but I'm falling asleep. You are awesome, please keep making these real and honest vlogs.

    • @MaggieClaydon
      @MaggieClaydon  8 років тому

      Thank you so much! That seriously means so much to me. But I am confident with myself now and I love myself and I am so glad I reached that point. I will always be 100% honest in my vlogs and videos, that I can promise you.

    • @OTHERVERSETCG
      @OTHERVERSETCG 8 років тому

      Maggie Claydon What did you do to get to that point?

  • @e.4738
    @e.4738 8 років тому

    You are my absolute idol and I love how courageous you are. You're beautiful inside and out and you will get through this. Here for you anytime xx

  • @LazerNR
    @LazerNR 7 років тому

    Stay strong. I know it is hard but hopefully it gets better with the surgeries.

  • @sunnydae8521
    @sunnydae8521 6 років тому +1

    You're a warrior 💖

  • @lupuswarriorlivelaughlove4397
    @lupuswarriorlivelaughlove4397 7 років тому

    It's our life and we just have to take one day at a time as it comes and continue to fight for our life ..

  • @ConestogaCreek
    @ConestogaCreek 6 років тому

    Why no sleep?

  • @speedydknouri2229
    @speedydknouri2229 7 років тому +2

    What illness are u treating?

    • @MaggieClaydon
      @MaggieClaydon  7 років тому +3

      many... to name a few: CMT4C, ehlers danlos syndrome, POTS and other problems

    • @chronicinokla
      @chronicinokla 7 років тому +4

      I'm very sorry babe. I have Dercums Disease, Rheumatoid Arthritis, P.O.T.S., Fibromyalgia ,Sjogrens, and Adrenal Insufficiency along with other diagnosis that go with them...... doctor is thinking that also elhers danlos so know you aren't alone. I try like you to not let illness define me it's just something I have. Big hugs

    • @speedydknouri2229
      @speedydknouri2229 7 років тому +1

      Maggie Claydon ...Thanks for answer and keep up the great work :)

  • @LupusPositiveLife
    @LupusPositiveLife 7 років тому

    It’s untreatable??? I’m so sorry 😐...did you mean there is no cure??? My daughter has scoliosis also she was fitted for a brace ...she also has Lupus as well as I do..Praying they find treatments soft hugs

    • @MaggieClaydon
      @MaggieClaydon  7 років тому +2

      No cure or real treatment (other than meds for symptom) for my disease which has caused the scoliosis. Thanks love, Im praying for you and your daughter!

  • @pinkliberty21
    @pinkliberty21 6 років тому

    Hi Maggie, I'm so sorry about your health condition. I work for a medical TV show, and we're looking for people that are undiagnosed I wasn't clear from your videos if you've been diagnosed or not. If you're not, and want medical help please send me your contact info. Get well.

  • @mickfizz1
    @mickfizz1 5 років тому

    Maggie ...what do you have, if i may ask ... ? I wish you well

  • @SreeramReddyB
    @SreeramReddyB 6 років тому +1

    Beautiful eyes 👀❤️❤️!!

  • @martinbonventre3208
    @martinbonventre3208 6 років тому

    I LIKE YOUR VLOG AND YOUR BOYFRIENDS
    I AM IN MY 20 TH YEAR WITH MS
    FIGHTING IT SUCCESSFULLY WITHOUT THE TYPICAL MS DRUG.
    IT FEELS LIKE I FROZE MY PROGRESSION
    I AM ONLY TAKING ALL NATURAL
    1,200 MG
    ALPHA LIPOIC ACID
    AND
    A GOOD MULTIVITAMIN MULTI MINERAL VITAMIN
    THANKS FOR THE VLOGS
    AND STAY STRONG FELLOW MS WARRIOR

  • @skywalker8110
    @skywalker8110 6 років тому +1

    I still love you.

  • @youlol7331
    @youlol7331 7 років тому +4

    You are so beautiful!

  • @MadisonBailee
    @MadisonBailee 8 років тому +3

    mags you are the most beautiful and strong person i know. i love you so much and we are in this together!!! Expect frequent visits from me and I EXPECT MORE VIDEOS!!

    • @MaggieClaydon
      @MaggieClaydon  8 років тому +4

      I LOVE YOU SIS AND SCREW WHAT DOCTORS SAY WE ARE GOING TO TRAVEL IN FEB!
      i have proved them wrong my whole life, why stop now

  • @Sara-py7yw
    @Sara-py7yw 5 років тому

    You're so gorgeous, I'm jelous!!

  • @l8nitelos867
    @l8nitelos867 7 років тому +2

    Your beautiful!

  • @akshitmusic8086
    @akshitmusic8086 6 років тому +1

    Beautiful eyes 💖

  • @jackwong9007
    @jackwong9007 6 років тому

    You have beautiful eyes.

  • @pedramrad4727
    @pedramrad4727 7 років тому +6

    beautiful eyes

    • @MaggieClaydon
      @MaggieClaydon  7 років тому +1

      why thank you !

    • @pedramrad4727
      @pedramrad4727 7 років тому

      i saw your instagram,you so loveing foods

    • @pedramrad4727
      @pedramrad4727 7 років тому

      search persian restaurant in your city for find colorful delicious foods.

  • @howaboutno9573
    @howaboutno9573 7 років тому

    You are a beautiful, intelligent,and classy woman 👌💛

  • @paudib8982
    @paudib8982 5 років тому

    2 things Maggie CBD oil and yoga

  • @alexisfuhr1846
    @alexisfuhr1846 5 років тому

    ❤🖤💜💛💚💙❤
    What do you have again
    ❤🖤💜💛💚💙❤

  • @matildablomqvist7555
    @matildablomqvist7555 7 років тому

    ❤️❤️❤️❤️

  • @daheerfarsim1057
    @daheerfarsim1057 6 років тому +1

    You shake the camera too much otherwise you are great at vlogging

  • @hemantv1676
    @hemantv1676 6 років тому

    ❤ from india