![Aldelly V](/img/default-banner.jpg)
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Aldelly V
Добавлен 5 сен 2019
My name is Aldelly & I was diagnosed with Neuro Myelitis Optica when I was 27 years old. I started having symptoms of what I thought was nonsense, but little did I know that my whole life was about to change due to an invisible disease. Honestly, at this point in my life I feel it’s best to share my experiences, thoughts, feelings and craziness with anyone that can relate. My goal is to try to find answers that can better help a quality life not for me but others as well.
Mi nombre es Aldelly y fui diagnosticada con Neuro Mielitis Optica a los 27 años. Comencé a tener síntomas de lo que pensaba que no tenía sentido, pero poco sabía que toda mi vida estaba a punto de cambiar debido a una enfermedad invisible. Honestamente, en este momento de mi vida siento que es mejor compartir mis experiencias, pensamientos, sentimientos y locura con cualquier persona que pueda relacionarse. Mi objetivo es tratar de encontrar respuestas que puedan ayudar mejorar una vida de calidad para todos.
Mi nombre es Aldelly y fui diagnosticada con Neuro Mielitis Optica a los 27 años. Comencé a tener síntomas de lo que pensaba que no tenía sentido, pero poco sabía que toda mi vida estaba a punto de cambiar debido a una enfermedad invisible. Honestamente, en este momento de mi vida siento que es mejor compartir mis experiencias, pensamientos, sentimientos y locura con cualquier persona que pueda relacionarse. Mi objetivo es tratar de encontrar respuestas que puedan ayudar mejorar una vida de calidad para todos.
Parenting with a disability, NMO.
Parenting with a disability! We did an Instagram live to talk about parenting with NMO. Enjoy!
Просмотров: 153
Видео
QUARANTINE week 1/ Kids talk about NMO/ mom with disability
Просмотров 1914 года назад
Week #1 of quarantine and we've decided to make a video. My children talk about their experience of having a disabled mother (NMO), being in quarantine, and much more. Everything is way more fun from a kids perspective! I hope you enjoy it because it was fun to make!
Plasmapheresis, my experience! IT WORKS!
Просмотров 2944 года назад
It's been a while since I've posted a video and I finally have had the time & health to make one! After failing terrible with the IVIG(Panzyga) treatment and after long discussions with my neurologist I ended up having plasmapherisis treatment done. The wonders that this treatment provided for me is AMAZING! When I tell you that in 4 weeks I was back to doing things I wasn't able to like; lifti...
HANDICAP PARKING EXPERIENCE/PETITION.Support & share!
Просмотров 1664 года назад
Hi Fabs! Ever experienced a dirty look or nasty note while in a handicap parking space? In this video is one of many stories with handicap parking spots. Parking in the handicap space is a very big responsibility in which us(the disabled) have to be prepared. Why prepared? Prepared for all the dirty looks, comments, nasty notes & everything.Prepare to educate those around us as well. But what i...
Sending Spoons subscription box. Whats inside my box!?
Просмотров 1044 года назад
Sending Spoons is a company that sends a monthly subscription box to you or a loved one, dedicated to someone suffering from a chronic illness. It's the perfect way to lift the spirits of someone who is suffering from a chronic illness. I enjoyed every piece in my box and everything was very useful for my everyday life. If you haven't already check them out please do so in the link below.Thank ...
Alinker part 1
Просмотров 1164 года назад
Hey Fabs! I received my very first Alinker over two weeks ago but unfortunately I was an in between size and medium was not the correct size for me. I emailed the company and they responded quickly & were so helpful! Without any hesitation they understood my needs and resolved my issue. Today I received my Alinker again and I’m just as excited as the first time! This time i have a small size Al...
My experience with parenting with a disability , NMO.
Просмотров 1274 года назад
I think we can all agree that parenting is a complicated journey to go through , but we still do it with love,, but parenting with a disability is another subject. As a mother of two vey active young boys I find ways to challenge not only myself but my children on ways to keep active. From at home projects, cooking, to chores at home I always try and make the best of it. One of the reason why I...
Discharging myself from rehab. It just doesn’t make sense for me.
Просмотров 2074 года назад
UPDATE: After heavy consideration I’ve came to the conclusion that a rehab center is not the place for me. This is a great center for those who have an acute attack/injury. For me though, it just isn’t working. For 1️⃣ I miss my children & husband dearly. Secondly,2️⃣, I want to be home for the holidays. Thirdly,3️⃣, I’m back at my baseline of walking with my crutches. Fourthly4️⃣, I need to pu...
NMO flare
Просмотров 2284 года назад
UPDATE :This I was hospitalized with an infection causing me to flare up & cause me paralyze, loose my vision and all mobility issues. But I overcame it like a true #nmowarrior! More updates to come soon. 💚💚💚💚 For more on my updates please follow: Instagram: fab_nmo Facebook: Fab NMO #fabnmo #fabulouslylivingwithnmo #neuromyelitisoptica #nmo #neuromyelitisopticaspectrumdisorder #flareup #flareu...
RAW, emotional stages of dealing with a diagnoses.
Просмотров 2474 года назад
These past two weeks NMO has really kicked my butt! Through it all, I remind myself what I’ve already been through and keep positive. When you are living with an autoimmune disease like mine, it can get hard. The emotional rollercoaster that I been through so far serves me as reminder that there will always be brighter days. In this video, I talk about the emotional stages that I went through w...
Incontinencia urinaria y catéteres ! Mi historia , tips y soluciones.
Просмотров 1814 года назад
¡Esta semana estaré hablando de incontinencia urinaria y catéteres! Soluciones que tal vez puedan ayudar tu día a día. Compartiendo mi historia y experiencias de como yo vivo con NMO. Este vídeo contiene 2 parte en 1. Espero que les pueda ayudar de una forma o otra.😁 Sígueme Facebook: Fab NMO Instagram: fab_nmo Twitter: @fabnmo www.curemedical.com www.bardcare.com
Let's talk catheters and bladder incontinence with an autoimmune disease!
Просмотров 4444 года назад
This week I’m talking about bladder incontinence and catheters! Solutions that may help your everyday life. Sharing my experiences and my solutions along side living with NMO.This is a two part video in one. The first half is about bladder incontinence. The second part I'm reviewing catheters that I received. Hope you guys enjoy!! as samples. Want to try your FREE sample? Simply request them at...
Como me diagnosticaron con NMO/Devic's Disease
Просмотров 6954 года назад
Mi nombre es Aldelly y fui diagnosticada con Neuromielitis Optica cuando pensé que estaba en el mejor momento de mi vida. Con solo 27 años estaba comprando mi primera casa, finalmente graduándome de la universidad y con un trabajo muy exitoso. Hice todo eso mientras tenía dos hijos menores de 5 años y siendo esposa. De repente, yo, súper mamá con tacones, siempre tratando de lucir lo mejor posi...
How I was diagnose with a rare autoimmune disease, NMO (Devic's Disease)
Просмотров 3,3 тыс.4 года назад
Getting diagnosed with a rare autoimmune disease was a long scary journey for me. I've decided to tell my story in the hopes that I can help inspire others that may be going through similar situations. I was diagnosed with NeuroMyelitis Optica (Devic's Disease) & ever since then my life has never been the same. I will be posting videos in English & Spanish. I will be sharing my thoughts, experi...
Gracias por contar tu experiencia
It is coming up on my 3rd year anniversary of when I had my very first attack. Jan 18th,2019. My first symptom was not being able to go pee after 36 hours. Let's put it this way, I live in Vancouver, Wa and drove up to Seattle to catch a flight. ( this is about a 2.5 hr.dr.) You always go to the bathroom before leaving the house. I couldn't go more than a few drops. Fly from Seattle to Atlanta, Ga. I drank coffee during the flight, still no more than a few drops. Get to Atlanta, rent a car drive 3 more hours to my moms. Tried to use the bathroom several times at several places. A trip that was going to last the weekend, turned into a trip there and the same routine back and by the time I was picked up by the ambulance, I wasn't able to stand up. When I got to the er , I asked the nurse for a urinary catheterisation. He thought I had lost my mind. Trust me, I thought I'd never ever ask for one of those. By this time, I was afraid of bad things happening to the bladder. I had over a litter drawn out and was in the hospital for about 2 to 3 days before they figured it out with blood draws and lots of other tests. I had never seen so many Dr.'s at one time , up until the day before I was let out, I was seeing a couple of different teams. I'm actually glad I didn't try and find out while in S.C. due to I don't think they would have figured it out. I'm glad we made it back home to Vancouver, Wa. There are some really great doctors out here and I have a great neurologist. I get infusion therapy twice a year. Take tons of vits, lots of magnesium. Smoke lots of weed and the lst important thing I have found to help seeing I am a 57 year old patient with 0 hormones. I now receive hormones along with testosterones. I have way less pain in my back when the levels are up where they are supposed to be. It actually helps with several of my new symptoms due to the NMO or Transverse Neuro Mylitus Opicta also known as Devics. I was already living with Fibromyalgia, DDD, PTSD, and Migraines. You know what, life is still great. I wake up everyday and I'm able to walk again. My eye sight never was bothered. I believe God don't put more on us than we can bare.
Hola, quisiera que nos contaras las historias también en español 🥺 te agradecería
Sii lo tengo en español en mi canal chequea los otros vídeos
ruclips.net/video/5LQqlo7sK9o/видео.html
This is very helpful information. What kind of foods to avoid with this disease also is there any exercises to do with this disease?
I'm glad you found this helpful. I share more on my Instagram, please follow: fab_nmo
Türkçe altyazı yok malesef
2 years ago I was able to run marathon, now it's hard for me to get to grocery store. Coz of steroids i gained in weight.. I have NMO, hi from Russia
Yo vivo c Nmo trato de hacer q mi vida sea mejor yo no camino y trato de vivir c dignidad.SArgentina deunpueblo Monte Maiz.❤
Hey there Aldelly, kudos to you and your honesty while telling your story. I am sure you have had quite a time of it while going through so much yet your ✨ shiny spirit, positivity and tenacity have kept you going. Thank you for being so upbeat with such issues and these are not the easiest to deal with and talk about at all, yet for those who can relate, it is refreshing to know we are NOT alone in this. Another autoimmune disorder that can cause the urinary incontinence is diabetes. Which I developed one year after a bad car accident. At the age of 43 I became a Type 1 Brittle Diabetic. Little did we know just how much damage had occurred. My Autonomic Nervous System has been shutting down so my stomach does not digest food, and my bladder does not hold my urine. As my boyfriend said to me in a joking (and silly, loving manner), Ur In for a lot of trouble. Oh how right he was. I have gone through all of the treatments you mentioned. The Botox was my last hope but it only lasted for 2 weeks. Thus I have had four surgeries to have Medtronics’ Inter-Stim NEUROSTIMULATORS placed in my backside. They are supposed to work for up to seven years, but mine have only worked each time for about 7- 10 months. So now I have the chronic UTI’s starting and I am not sure of what to do next. Enough said about me. I truly just had to applaud you for sharing your story and remaining cool, calm and collected while doing so. More of those who get diagnosed with your condition should be told about your web-site. As a diabetic I usually wander through those sites looking for help. This time I am wondering “what next” 🤔, as my Urologist only would tell me, we will only have that conversation if and when needed. I am feeling ready to have that talk. So keep on doing all that you are and keep finding what works for you!! You are a bright light for many who suffer in solitude and darkness and for them, I thank you!! Stay strong, and stay well. Sending ☮️ and ❤️ your way as you continue to heal.
M 30 and I was diagnosed with NMO 2nhalf months back. Listening to you I can relate my symptoms and course almost the same. I am so pleased to see your videos. Keep posting and spread positivity ♥️
Thank you 😊
Ayuda por favor
Hola soy de ARGENTINA. Estoy en estudios para si ver si es,esclerosis o nmo por la cantidad de lesiones que hay en la medula. Asi salio en la resonancia. Tengo miedo estoy desesperada
Hola Claudia, yo salí positiva a la NMO, llegué al hospital con una inflamación muy grave en la médula espinal y dejé de caminar, he estado tomando fisioterapia y estoy empezando a dar mis primeros pasos después de mes y medio. El doctor me confesó que no tenía mucha fe en que volviera a mover mis piernas siquiera, la actitud es muy importante y también el expresar todo eso que estás sintiendo con alguien de tu confianza, tú puedes!!
Hola!!! Sigue mi pagina www.fabnmo.org No tengas miedo. Tienes instagram? buscame fab_nmo
@@Mmirnda Hola que bueno lp que dices!! Dios te bendiga y GRACIAS por responder aum no tengo resultados . Mil GRACIAS me animaa mucho
Were you on birth control following up to the diagnosis?
yes I was
@@aldellyv2893 I have a friend whose sister was perfectly healthy, and out of no where came the NMO diagnosis along with a stroke. No recent vaccines- no recent medical treatments- just birth control. I’m not saying there’s a link as there are no peer reviewed studies, but I personally suspect a link. We hear about infertility and cancers brought on by hormonal birth control, and I wouldn’t be surprised if there were collateral nervous system problems too. Again, this is not fact nor proven, just my suspicion.
Have you tried the Wahls Protocol? I just started my husband on it.
Hey! Yes but I’m so inconsistent, but I will keep trying.
hola mi nombre es natalia. soy ARGENTINA Y ME QUIERO CONTACTAR CON VOS,TENGO EL MISMO DIAGNOSTICO.
Hola! Me puedes mandar un email a fabulouslynmo@gmail.com
I can't hear you when with the volume turned all the way up. ☹ I was really hoping to watch because my brother was tested today for it after his health declined years after being diagnosed with MS.
Que linda m encanto ❤️
You are such a beautiful person! Thank you for your sharing🌷
Your so sweet thank you.
Hello you look great!!! I did the same treatment, I did 5 sessions at first. then for whatever reason they had me do another five, which worked because I got stronger and my movements started to come back. It was the most scariest thing to have your blood removed and get cleaned and then returned. Do you struggle with fatigue of the muscles? I find my muscle gets so fatigued like they've been running a marathon. Thanks for sharing
Miss St Vincent thank you!! Omg yes! My fatigue and muscles ate driving me insane, that’s exactly how I explain it to ny friends & family, I feel like I’m running a marathon. I feel stronger but not to the point of where i was a year ago. Hope with having more treatment i can get better. I’m glad you enjoyed my video 🙂
I wish I had this information when I was struggling with incontinence. However kegel exercises did work for me., As well as being aware of what I'm drinking and how much such.
Thats good that your aware of what works for you. Even with botox injections I have to watch what I drink as well. But it definitely helps!
hola mi nombre es Nicole y mi mamá tiene neuromielitis óptica, todos los síntomas que comentaste los tuvo mi mami y también se demoraron en diagnosticarle su enfermedad. Para ella fue difícil pasar de ser una mujer activa a depender ahora de otras personas, cambiar su estilo de vida totalmente. Pero ella tiene ya dos años y seis meses que sabia a que se tenia que enfrentar, le diagnosticaron la enfermedad en mayo del 2018, en el hospital Carlos Andrade Marín en la cuidad de Quito - Ecuador de ahí hasta ahora a tenido varias recaídas, de las cuales las ha superado y estamos aprendiendo a vivir con la enfermedad. Estamos conscientes que no hay cura, y haciendo lo posible para sobrellevar esto.
nicol landazuri gracias por compartir la historia de su mama. Si es súper difícil y súper complicado de convivir con la enfermedad. Pero por mi experiencia creo que tener una energía positiva es primordial. Uno es un experimento de la ciencia y hijo de dios, solo lo podemos vivir la vida positivamente! Por eso e decido compartir mi historia porque se que no soy la única. Abrazos!
Girl I really love the way you embrace your autoimmune disease!!! Very brave of you 😘😘
hugs!
Yo nunca tome los convencionales. Solo Protocolo Coimbra. Desliga las enfermedades autoinmunes.
Hola Lucía ..podrías pasarme tu contactó
Dónde aprendiste español?
En USA :)
☺️☺️☺️☺️
Muchas gracias por regalarnos tu historia! Me diagnosticaron hace menos de 1 mes con nmo, es muy duro pero como decís, vamos a estar bien, no estamos muriendo, y siempre hacia adelante! Concuerdo con vos, la punción lumbar es lo peor! La sufrí muchísimo, pero mientras ayude al diagnóstico hay que hacerla, no queda otra.. Muchas gracias por compartir tu experiencia! Ojalá sigas así de bien siempre :)
Gracias por tus lindas palabras :)
Gracias x compartir
Me encanta el humor que tienes para explicas tu situación
Gracias :)
Thank you so much I found your videos at the perfect time. I’ve been really struggling the last year after my first bout of severe optic neuritis.. I went from basically “normal and healthy” 28 with two kids to blind in one eye within a day or two and ended up in a neuro ophthalmologist office when he looked at me and said have you ever heard of devics disease? Umm no?!! He sent me to be admitted to the hospital for steroids and a battery of tests for a week. Vision came back. Sent home without any official diagnosis. Long story short the specialist have been going back and forth between MS and NMO for a whole year and it looks like they are leaning towards NMO and it is scary girl! I feel so alone I barely knew of MS, definitely never heard of NMO or even met anyone that has it.. your videos are definitely inspiring to see I’m not alone in this battle.. ❤️ thank you
You are not alone! We have similar situations and honestly if I'm alive and talking about it, you will be FINE! yes its very hard but we have to be strong. find me on FB &IG. :) Thank you watching, that is my goal to help others :)
Hello ladies. I just came across your video today. I was diagnosed with devics in 2008. I was 25 when it happened to me. Very close to the same age as both of you were. You are not alone. The statistics for having devics is 5 out of a million ppl. If you like to contact me. You can find me on iG. @oclove I have glasses on in my pic lol. I took was blind in one eye and was paralyzed as well...but with the power of prayer and an optimistic view and determination I over came that and came see and walk again. But I still have some issues. I'm glad to meet more ppl who I'm sure can understand me.
I am so proud of you!!! And yes you are so lucky I love you !!!! ❤️💕😘
lol love you to!
Eres maravillosa, sigue así, sigue adelante, dios nunca va a desamparar a una hija.
Gracias por sus lindas palabras.
Very strong woman and great positive attitude regardless of what going through.... always fabulous 🥰🥰🥰
Angeceli Monegro thankx my luv!
Great video! So strong thank you for sharing ❤️❤️❤️❤️
THEZIMBEE thank you !
You go girl ❤️❤️❤️
beauty boucher ❤️💚