Marti's MS Life
Marti's MS Life
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Dating in Your 40s with Baggage… and a Pharmacy
In this episode, I’m diving into the wild world of dating in your 40s-while living with a chronic illness. I’ll be sharing some personal stories from my latest birthday, those awkward 'getting to know you' moments, and how self-care has become my top priority as I navigate relationships. I’ll also talk about the ups and downs of opening up about my health with potential partners. Spoiler alert: it’s not always easy! But through it all, I’m learning to give myself (and others) a little more grace on this journey of love and life. Tune in for some laughs, real talk, and a reminder that we’re all just figuring it out as we go!
มุมมอง: 38

วีดีโอ

My MS Diagnosis
มุมมอง 863 หลายเดือนก่อน
In this episode, I open up about my journey with multiple sclerosis, starting from my diagnosis story to where I am today. I share the early symptoms I experienced, the shock of the diagnosis, and how I’ve gradually moved towards acceptance and advocacy. I talk about the importance of giving ourselves grace and making room for the wide range of emotions that come with living with a chronic illn...
Hope on the Horizon: Exploring CAR T Cell Therapy with Kyverna Pharmaceuticals
มุมมอง 934 หลายเดือนก่อน
In the audio of my episode, I’m thrilled to share my recent trip to San Francisco, where I was invited by Kyverna Pharmaceuticals to learn about their pioneering CAR T cell therapy, currently in clinical trials. This therapy holds incredible promise for those of us living with multiple sclerosis and other chronic illnesses. My visit left me filled with hope and excitement for the potential brea...
When Bob Iger Replied: Unpacking the New Disney DAS Rules
มุมมอง 1.9K4 หลายเดือนก่อน
In this episode, I delve into the recent changes to Disney's Disability Access Service (DAS), sharing my personal experiences and frustrations. Despite facing a lack of empathy from a cast member during a Zoom interview and an unhelpful response from guest services, I remain resolute in advocating for change. I recount the surprising moment when Disney's President, Bob Iger, replied to me, unde...
Optic Neuritis: Coping with Irreversible Damage of MS
มุมมอง 405 หลายเดือนก่อน
In this episode, I open up about my recent health struggles and the profound emotional toll they've taken on me. Living with an incurable disease has been incredibly challenging, especially coming to terms with situations that can't be fixed or where answers are elusive. I share my personal journey with optic neuritis, the constant fear of relapse, and the irreversible damage revealed by my MRI...
Searching for Grace within My Fertility Journey
มุมมอง 376 หลายเดือนก่อน
In this episode, I open up about my personal fertility journey, sharing the challenges and emotional decisions I've faced. From freezing my eggs to navigating IVF, and the complexities of finding a sperm donor, I discuss it all. I'll also touch on how my health has influenced my path and the tough choices I've had to make. Join me as I explore the importance of giving oneself grace and the acce...
Unlocking First Class: Points, Miles, and Travel Tips
มุมมอง 226 หลายเดือนก่อน
In this episode, I reflect on my three-month podcast journey and the joy it has brought me. I share my recent travel experiences, revealing how I managed to fly first class for most of my flights using points and miles. I emphasize the importance of understanding the points game and provide valuable resources and tips for maximizing travel rewards. I encourage all listeners to take advantage of...
From Pleasing to Peace: Navigating MS and Relationships at 40
มุมมอง 366 หลายเดือนก่อน
In today's episode, I dive deep into how turning 40 has reshaped my relationships and the way I navigate friendships, especially in light of my journey with multiple sclerosis (MS). I'll share the challenges I've faced in maintaining these connections and why setting boundaries has become essential for my well-being. We'll explore the importance of being transparent and communicative and how th...
Finding Light: My Journey Beyond Sexual Assault
มุมมอง 337 หลายเดือนก่อน
As I dive into the latest headlines, I'm hit hard by the news of Harvey Weinstein's overturned verdict. It's a gut-wrenching reminder of the uphill battle survivors face. Sharing my own story of assault, I confront the power imbalances and systemic hurdles within the entertainment world. Through the pain, I find solace in the notion of self-forgiveness and the promise of a brighter tomorrow. Jo...
Embracing Resilience: Conversations with Hillary about MS and Motherhood
มุมมอง 697 หลายเดือนก่อน
Come along with me for a heartfelt conversation with Hillary Lofton-Mosley, where we dive into her journey with multiple sclerosis (MS). From the whirlwind of diagnosis to unexpected surprises like a surprise pregnancy, Hillary shares her story with honesty and a sprinkle of humor. We'll laugh, we'll cry, and we'll navigate the twists and turns together, exploring resilience, finding support, a...
Shared Courage: My MS Journey Through My Sister's Eyes a Conversation w/ Dr. Alisha J. Hines
มุมมอง 568 หลายเดือนก่อน
In this heartfelt chat, my sister Alisha and I dive deep into the impact of my MS diagnosis on our sisterhood. We go back in time and reflect on the rollercoaster of emotions we've experienced, from denial to acceptance, and how it's reshaped our relationship. Through laughter and tears, we share the little moments of understanding and support that have carried us through. It's a story of love,...
Whatever Your Best Is It's Enough
มุมมอง 398 หลายเดือนก่อน
In this episode, I share a journey that's close to my heart-MS Awareness Month. It's a time filled with activities and events I'm deeply involved in, all aimed at raising awareness for Multiple Sclerosis (MS), a condition that's part of my life. I'm incredibly thankful for the support I receive; it means the world to me. Yet, I won't shy away from admitting the anxiety that comes with asking fo...
Catching Up With Lauren Thomas Living and Advocating with Narcolepsy Cataplexy
มุมมอง 218 หลายเดือนก่อน
Curious about life with narcolepsy? Join me in an eye-opening conversation with my dear friend Lauren Thomas. We unpack her journey living with Narcolepsy Cataplexy, from navigating treatment to her unforgettable experience speaking at the White House. Tune in as we explore the importance of advocating for sleep equity and the personal challenges of seeking diagnosis. Lauren's story is a testam...
Disney Races, Disney Parks, & Some Bravo w/ Kyle Stephen
มุมมอง 348 หลายเดือนก่อน
In this chat, I get real with my friend Kyle about our wild ride with multiple sclerosis and how we tackled the Run Disney Marathon together. Picture this: we met during those crazy pandemic times, thanks to a friend who thought we’d hit it off - and boy, were they right. Kyle spills the beans on what went down when he first got his diagnosis and we dive into why it's super important to have pe...
The Isolation of Pain
มุมมอง 449 หลายเดือนก่อน
n this episode, I open up about the silent battles with MS pain and its sneaky way of messing with friendships and daily life. I touch on the tricky bits of explaining what this pain feels like and the extra stuff you've got to juggle when you're living with a chronic illness. It's a bit about the loneliness and the guilt trips, too, and those hidden struggles that aren't always obvious. I chal...
Brain Surgery, Trigeminal Neuralgia, Firing My Doctor
มุมมอง 1109 หลายเดือนก่อน
Brain Surgery, Trigeminal Neuralgia, Firing My Doctor
Happy V Day!, Dating with MS, Dating in Your 40s
มุมมอง 679 หลายเดือนก่อน
Happy V Day!, Dating with MS, Dating in Your 40s
Barely Making It in 2024, When You Know Something's Wrong But No Doctors Will Listen....
มุมมอง 709 หลายเดือนก่อน
Barely Making It in 2024, When You Know Something's Wrong But No Doctors Will Listen....
Grace Through Pain: A Journey to Hope Ep. 1 Meet Marti
มุมมอง 8810 หลายเดือนก่อน
Grace Through Pain: A Journey to Hope Ep. 1 Meet Marti
My First Speech!
มุมมอง 3210 หลายเดือนก่อน
My First Speech!
Cocktails with Marti and Naz Ep 11 We're Back!
มุมมอง 1.1K2 ปีที่แล้ว
Cocktails with Marti and Naz Ep 11 We're Back!
Breathing Room
มุมมอง 693 ปีที่แล้ว
Breathing Room
Ocrevus and Selma Blair
มุมมอง 3.1K3 ปีที่แล้ว
Ocrevus and Selma Blair
It's Ok to not be Ok.
มุมมอง 3.2K3 ปีที่แล้ว
It's Ok to not be Ok.
Conversation with Zach Frank from Observe Gently, MS and ADHD
มุมมอง 2.7K3 ปีที่แล้ว
Conversation with Zach Frank from Observe Gently, MS and ADHD
Telling Your Doctor "No"
มุมมอง 2.8K3 ปีที่แล้ว
Telling Your Doctor "No"
Episode 10 Stop Child Marriages
มุมมอง 1K3 ปีที่แล้ว
Episode 10 Stop Child Marriages
Episode 9 Awards Season Predictions
มุมมอง 1.1K3 ปีที่แล้ว
Episode 9 Awards Season Predictions
Episode 8 Christmas Episode
มุมมอง 1.1K3 ปีที่แล้ว
Episode 8 Christmas Episode
Episode 7 How We Got Here
มุมมอง 1.1K4 ปีที่แล้ว
Episode 7 How We Got Here

ความคิดเห็น

  • @YeahYeahBeebisI
    @YeahYeahBeebisI หลายเดือนก่อน

    I'm a few months late but THANK YOU for having the bravery and strength to go through this and document it for us. Geez... that cast member would. not. let you speak I'd love to know what would happen if someone demanded a refund because these Are NOT accommodations It's especially devious how they make you wait until the final payment is due (30 days before) to give you a judgement! and that veiled threat about recording! Florida technically requires two-party consent BUT if they declare they are recording and force you to agree, that IS their consent. And now is not the time to mention that!!

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc หลายเดือนก่อน

    Needed the laugh 😂 dating after 35 is a nightmare

  • @mado11373
    @mado11373 หลายเดือนก่อน

    I would recommend this statement “please explain to me how the accommodations you have offered will allow me to have an equal experience to an able bodied guest” You can also say “are you telling me that I must intentionally wait until a medical episode has already begun before having access to accommodations?” “Is this not a recommendation to cause intentional harm?” Also inform him that rider switch doesn’t work if you need a caregiver with you.

    • @mado11373
      @mado11373 หลายเดือนก่อน

      You also have every right to ask for that “healthcare practitioner”’s NPI number.

  • @blueable1
    @blueable1 2 หลายเดือนก่อน

    Oh sure 90 minutes in line sucks for EVERYBODY. My feet hurt, my back hurts, I'm hot and thirsty and bored, but I do it because I want to go on a ride. That's the price we all pay. Now everyone can say they can't do it and they're supposed to get a ten minute wait so they can eat or rest or shop or ride something else? Not fair. I'm glad the rules were changed.

  • @Haveahollyjollylife
    @Haveahollyjollylife 2 หลายเดือนก่อน

    He really argued with you about your disability while saying he “totally understands” in the most condescending tone imaginable. How is there no class action lawsuit at this point

  • @Dolcevita_bakes
    @Dolcevita_bakes 2 หลายเดือนก่อน

    So I’m curious you sent the record of the conversation how did you do that when you were on the phone with him? Were you on your iPhone with him and recording it at the same time or were you on the other computer with him and then recording with your iPhone I’m just trying to figure out how and also did you get that notice in the beginning where it states that you can’t record that it’s illegal to record I’m wondering how you’re sharing this without getting in trouble I just hope that you don’t because these kind of calls need to be shared far and wide

  • @SolemCraft
    @SolemCraft 2 หลายเดือนก่อน

    The Democrats, historically, have advocated for those with disabilities and we can leverage the republicans, to make up ground, on this issue. Everyone should be against discrimination.

  • @harmony_kh_kairi
    @harmony_kh_kairi 2 หลายเดือนก่อน

    One thing I'm thinking right now at around 19:40 is how dumb it is to try to say that having DAS before wasn't a way to tell CMs at the ride you are disabled? No other type of pass shows up blue 1st with a picture of the person when you scan in other than a DAS reservation. It was an instant easy tell that a person had gone through guest relations and was being accomadated for a disability. That's the biggest problem with the current system is if we're denied we have to explain our disabilities in public spaces, to people without any medical knowledge and beg for accommodation at each ride with CMs that may or may not want to or be properly trained to know how to accommodate your disability. The mental strain alone in having to explain to multiple people in one day what you need and why is exhausting and can have a make effect on how long you can actually enjoy the parks compared to someone without a disability who is being mentally taxed now too. The best part of the old DAS is you explained what you needed one time and after approval you didn't need to ask for help or explain your problems again until renewal time (and often at renewal you'd just get asked if anything had changed and if not it was renewed). This protected people's privacy as well as giving them peace of mind that they'd be accomadated without having to advocate and fight with others to be assisted multiple times a day. Also just to add, I'm autistic and was denied because I "understand the concept of a line." My trips since the denial (3 of them since we're close and passholders) have been miserable. Accomadations at the rides are non-existant and CMs are rude and sometimes outright cruel. They will continue to tell you to go stand in line until you can't and when you can't and leave they won't help you.

  • @InternetJury
    @InternetJury 2 หลายเดือนก่อน

    The original intent of DAS never said anything about developmental disabilities. That's an absolute fabrication on Disney's part. In fact this was referenced in a federal case regarding DAS when a guest tried to sue Disney because his parents wanted something above and beyond DAS. They lost... rightly in my opinion. But in that case, the judge pointed put the materials and testimony from Disney about why DAS was created. Specifically, I'm referring to A.L. v. Walt Disney Parks & Resorts US, Inc.. [469 F. Supp. 3d 1280 (M.D. Fla. 2020)]. "The Court finds that the documented fraud and abuse of the GAC program led Disney to develop the Disability Access Service ("DAS") which replaced GAC on October 9, 2013. The Disney summary brochure explains "the goal of the DAS Card is to accommodate Guests who aren't able to wait in a conventional queue environment due to a disability." After arriving at the park, the disabled guests stop at Guest Relations to discuss their specific needs and a Disney employee provides a DAS card or other accommodations. Disney's description of the Disability Access Service Card is as follows: The Disability Access Service, "DAS" Card, is intended for Guests whose disability prevents them from waiting in a conventional queue environment. This service allows Guests to schedule a return time that is comparable to the current queue wait for the given attraction."

  • @proutsneck2000
    @proutsneck2000 2 หลายเดือนก่อน

    He sounded hostile and rude. I can’t believe they are doing this.

  • @megany0510
    @megany0510 3 หลายเดือนก่อน

    I have MS as well so I'm happy someone addressed this issue since I'm a Disney adult also!

  • @kennethclausell6788
    @kennethclausell6788 3 หลายเดือนก่อน

    Great video I also have a physical disability and no longer get the DAS pass. I no longer go to Disney until they fix this problem. I have sent emails to the general email but after your video I am going to send some email to upper management like you did cause this is a fight worth having and the more voices they here from the better.

  • @meredith9854
    @meredith9854 3 หลายเดือนก่อน

    Love you!!!

  • @ChristinaEaton23
    @ChristinaEaton23 3 หลายเดือนก่อน

    Stated in the ADA law: “In enacting the Americans with Disabilities Act, Congress concluded that it was important for the current legislation to use terminology most in line with the sensibilities of most Americans with disabilities. No change in definition or substance is intended nor should be attributed to this change in phraseology. The term "disability” means, with respect to an individual - (A) A physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) A record of such an impairment; or (C) Being regarded as having such an impairment. If an individual meets any one of these three tests, he or she is considered to be an individual with a disability for purposes of coverage under the Americans with Disabilities Act.” Disney needs to read up on the law. They cannot discriminate one disability over others. They need to follow the language of the law. Additionally, the ADA law states: “§ 36.302 Modifications in policies, practices, or procedures. (a) General. A public accommodation shall make reasonable modifications in policies, practices, or procedures, when the modifications are necessary to afford goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities, unless the public accommodation can demonstrate that making the modifications would fundamentally alter the nature of the goods, services, facilities, privileges, advantages, or accommodations.” Unless Disney can prove that going back to what they did before, where you get a return time equal to that of the standby line and go to the LL/fast pass line FUNDAMENTALLY alters the nature of their services”, they are not within the language of the law and what they’re doing is illegal.

  • @ChristinaEaton23
    @ChristinaEaton23 3 หลายเดือนก่อน

    Thank you for all of your efforts! As someone with severe asthma, an ambulance COULD be called in the middle of the line if I start having an attack due to the heat and humidity. The accommodations they’re offering aren’t “reasonable accommodations” for many of us with physical disabilities, especially if you need someone to help calm you down and give you medicine. The key term is “reasonable” in the ADA law, not just any old accommodation they “think” gets them off the hook to check off a box. It’s just not “reasonable” for many of us and you bring up excellent points. I’m glad they’re at least going back to the drawing board and returning to the conversation. “Have a magical day” is just an empty statement with no meaning behind it. When I went in the past, the DAS gave a return time equal to the standby wait time, but when you returned, you were put on the fast pass/LL line since you waited already, but you didn’t have to explain your situation to everyone each time. It was all under DAS and the magic band covered it and it was a very fair system. You weren’t able to stack times because you had to use one DAS return time before getting another. It was very fair because you’re still waiting the same time like everyone else. It’s actually the system Universal used when I went there too. The alternative of talking to a cast member each time is humiliating, it calls you out, and negates the “magic” of your day. If they are truly worried about people scamming the system, I would gladly bring medical documentation. I actually always did even when they didn’t ask for it, and I carry a breathing machine with me. They say they can’t violate HIPPA laws, but they’re willing to violate ADA and federal laws? It can’t be a pick and choose which laws you want to follow just to appease their own greed. I will not buy Disney tickets unless this is fixed because the magic has been dipped in poison, and that apple leaves a bad taste in my mouth. It’s immoral and against what Disney stands for. PS: New York State law says “New York is a one-party consent state. This means that only one party must consent to the recording of an in-person or telephone conversation. In other words, if you are a party to the conversation, you may record without the other person’s consent. But unless you obtain permission in advance, you are prohibited from recording a conversation in which you do not take part.” So in other words, if you are involved in the conversation, you CAN record a conversation you are involved in if you consent to the other party recording you. Disney cant make up laws that are negated by actual law. So it’s good to look up the laws in your state and be very mindful of your rights! Reading the full ADA law is also important because it clearly states what a disability is and what can and can’t be done: www.ada.gov/law-and-regs/regulations/title-iii-regulations/#top Especially regarding Eligibility requirements, these conditions are essential to follow: §36.301 Eligibility criteria. (a) General. A public accommodation shall not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary for the provision of the goods, services, facilities, privileges, advantages, or accommodations being offered. (b) Safety. A public accommodation may impose legitimate safety requirements that are necessary for safe operation. Safety requirements must be based on actual risks and not on mere speculation, stereotypes, or generalizations about individuals with disabilities. (c) Charges. A public accommodation may not impose a surcharge on a particular individual with a disability or any group of individuals with disabilities to cover the costs of measures, such as the provision of auxiliary aids, barrier removal, alternatives to barrier removal, and reasonable modifications in policies, practices, or procedures, that are required to provide that individual or group with the nondiscriminatory treatment required by the Act or this part.” So they cannot say Genie+ is an accommodation because that violates (C) Charges - legally you can’t impose a charge to get the modification needed. DISNEY IS NOT FOLLOWING THE LAW!!!

  • @brianhernandez589
    @brianhernandez589 4 หลายเดือนก่อน

    I too WAS a Disney adult. Growing up in southwest Florrida, I have been a frequent Disney World attendee since it's opening. My children grew up on Disney. My grandchildren are also Disney fans. However, recently, things have changed. In February of this year, I took my daughter's entire family (husband and children) to EPCOT, Animal Kingdom, and Hollywood Studios. As usual, I applied for my DAS pass and was approved. We had a fine time but I found we spent more time on the app than socializing and enjoying each other's company. Imagine my surprise when trying to plan a 4th of July couple's trip that I was denied DAS even though I had previously used it on a regular basis. I have several neurological issues, any of which should have, and previously had, allowed me access. Not to mention that I'm also on an organ transplant recipient list. I was told to "practice" waiting in line at home or buy Genie+. Needless to say, Disney has proven beyond the shadow of a doubt that they no longer deserve my business. How sad. Walt would cry if he could see what Bob Iger has done to his company.

  • @MichelleNicoles
    @MichelleNicoles 4 หลายเดือนก่อน

    This guy gave me a migraine 🤦🏼‍♀️ It’s so disheartening. I have pots, bradycardia and vasovagal syncope. I’m a mess when it’s hot and when I’m standing in one place for too long. I pass out and sometimes my heart stops (my last tilt table test was terrifying) and I also can throw up when I come to. Tell me how if I am halfway through an hour long queue that I can get out fast enough to get someone’s attention? Screw riding the ride at that point, I just need to make sure I’m safe. The lightning lanes were so much safer. Having DAS before was amazing. Not having to worry about getting back to the parks in time for a return time was so nice. Sometimes when I flare up, it can take hours for me to recover enough to get back out there. I just hope we’re all heard and Disney changes.

    • @MartisMSLife
      @MartisMSLife 4 หลายเดือนก่อน

      @@MichelleNicoles it’s heartbreaking and I have so much trauma now from that castmember call. I’m praying Disney will do the right thing

    • @blueable1
      @blueable1 2 หลายเดือนก่อน

      Disney is not a hospital. If your heart is stopping, you're not fit enough to be on any rides. Do you know how ridiculous you sound? You will die if you have to wait in line like everyone else? Stay home then. Disney isn't forcing anyone to ride and die.

  • @AmieWeber
    @AmieWeber 4 หลายเดือนก่อน

    Accommodating people with autism and developmental disorders was never the sole intent. That's simply gaslighting from Disney

    • @MartisMSLife
      @MartisMSLife 4 หลายเดือนก่อน

      @@AmieWeber I agree!!

    • @AmieWeber
      @AmieWeber 4 หลายเดือนก่อน

      @@MartisMSLife in my next group email I plan on attaching a screenshot of the original DAS information page. Nowhere does it say anything about autism or developmental disabilities. I'm sticking around for this fight and I won't back down until they make it right

    • @MartisMSLife
      @MartisMSLife 4 หลายเดือนก่อน

      @@AmieWeber I will be at Epcot tomorrow for the demonstration wearing blue! We are not giving up

    • @AmieWeber
      @AmieWeber 4 หลายเดือนก่อน

      @@MartisMSLife I wish I could be there!

  • @sharonarcher797
    @sharonarcher797 4 หลายเดือนก่อน

    Its not just exhausting, it is dehumanizing to have to plead like Oliver Twist "Please, sir, may I have some access" at every ride after paying for the privilege of laying your struggles bare over and over and over again for anyone within earshot to overhear.

    • @MartisMSLife
      @MartisMSLife 4 หลายเดือนก่อน

      @@sharonarcher797 it’s deplorable and so traumatizing

  • @missmindy327
    @missmindy327 4 หลายเดือนก่อน

    Please tell me what NUMBER YOU CALLED that is specifically for DAS? I’ve tried to talk to someone and have had zero luck speaking with anyone! 😢

    • @MartisMSLife
      @MartisMSLife 4 หลายเดือนก่อน

      Unfortunately you have to keep emailing guest services for a call to happen. A friend of mine was able to connect me with Bob directly so that was unique. I am praying for a change soon!

    • @missmindy327
      @missmindy327 4 หลายเดือนก่อน

      @@MartisMSLifethat is amazing! I wish! My husband has an ostomy and hernia the size of a baseball! His autoimmune disease has become life threatening and almost died from it three times this past year… the DAS prevents his ostomy from leaking in the queue line and creating a biohazard and shutting down the attraction to clean it up. It’s disheartening to know that DAS is not an option for him and HE needs it. The return to queue isn’t an option because it still has him running to the restroom for an ostomy issue and a biohazard. A wheelchair isn’t an option because it’s not a mobility issue. I don’t know what we’re going to do. It’s so sad

    • @AmieWeber
      @AmieWeber 4 หลายเดือนก่อน

      I've sent 4 emails to a group of 32 people. I got a call back after the 3rd. I'm sending weekly emails until this nonsense is fixed. Keep sending emails, request a call and add your phone number

  • @andreacomiskey2249
    @andreacomiskey2249 4 หลายเดือนก่อน

    The first time I went to Walt Disney world was for America’s bicentennial in 1976. I was there every time they opened a new park. I couldn’t remember all the times I want there with family, fiends or just by myself. We live in michigan so it so not a fast cheap trip. We went every year as a family of 4 2007 staying at 7 different disney resorts until 2023. Disney was my happy place. I was diagnosed with MS in 2010 and ironically had one of my major relapses during a Disney trip. I rented a scooter for my first couple years, then bought on because going every year, it was cheaper. We had different issues with hotels or rides but Disney cast members were always wonderful and helped fix the issue from replacing my 5 years olds water spritzer after someone stole it, to upgrading us when our hotel beds looked like the defensive line of a football team used it for practice. My husbands proposed to me in front of Cinderella’s castle. We were planning on doing a huge Disney trip for our 25th anniversary. Now that’s not going to happen. Without a DAS, I can’t do Disney. Disney changed the guest assistance pass a while ago to add spectrum. With the new changes they are excluding everyone except people on the spectrum. How is that inclusive? I’ve never been as disappointed in anything as I am with the current Disney. I thought I was going to go to disney until they put me in the ground, I thought I would go with my grandkids like my grandmas did. Thank you for letting me rant. I know you understand what I’m feeling. I hope you get a happy ending to your Disney story!

    • @MartisMSLife
      @MartisMSLife 4 หลายเดือนก่อน

      It just so disheartening I am hopeful they are going to get back on the right track soon!! Sending you love

  • @fuctus45
    @fuctus45 4 หลายเดือนก่อน

    I'm glad someone's tackling this topic. As a fat person myself, I was buying four burgers for myself to last as snacks for the mext few hours. One of the rudest employees made a snarky statement, "Oh, a big ordeer for a real big boy!" For reference, I'm a grown adult. Talking to me that way is completely uncalled for and unacceptable. You are NEVER to speak to me that way. Not to mention one of the mascots had a fat fetish and was NOT shy about letting me know it. I hate this fatphobic company.

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc 4 หลายเดือนก่อน

    It appears as a glare of light on the side of your eye... best way to describe it is a whip glare on sclera... I use to have it on my left and right eye but it only shows on the outside of the sclera... it's not painful but I thought my vision was going bad and I may have floaters... It could have a starting point t tho... in 2015 or so I smelled a burning metal smell and heat while waiting in line at Wendy's and my pupil completely closed and blacked out.. it felt like my eyes closing and vision circle closed while eyes open until everything was black

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc 6 หลายเดือนก่อน

    Sometimes being selfless is a better decision... Made the choice of no children myself

  • @deshun538
    @deshun538 6 หลายเดือนก่อน

    After I tell them they want to cater to me. Take care of me and my kids. I'm like wait let's get to know each other better before we talk about being a couple. We need to be friends first

  • @deshun538
    @deshun538 6 หลายเดือนก่อน

    See I'm a talker. I have M.S so I use a cane on a good day. Sometimes I use a power chair. When they ask me what happened I tell them about the M.S. Whenever I'm around someone I'm talking. I'm in TX so most conversations start off about the weather. If my kids with me we talk about kids. I let them know from the start I have M.S So I can't be in the heat and I can't stand up for a long rime

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc 6 หลายเดือนก่อน

    Your frustrated your going through alot people can't relate even if they are in the same situation... I understand you want relationships but you want your space at the same time and tired of people buttering up the situation... You don't want to hear the I love you shit because they can't solve your issues fuck a hug that's not it... Speak your mind this is your journal to keep your speech going in a consistent way. I Spoke and I'm out... All black no bright colors

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc 6 หลายเดือนก่อน

    ❤🫠🫣📘📖⚘️💌👩🏽‍❤️‍👨🏾

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc 7 หลายเดือนก่อน

    🥰➡️📵

  • @HowardQuattlebaum-rz5oc
    @HowardQuattlebaum-rz5oc 7 หลายเดือนก่อน

    🥰

  • @elizabethmossoian6719
    @elizabethmossoian6719 7 หลายเดือนก่อน

    Both ladies are very good speakers and interesting to listen to! Thanks for sharing 👍

    • @MartisMSLife
      @MartisMSLife 7 หลายเดือนก่อน

      Thanks so much for listening 🤎

  • @naturallydope6971
    @naturallydope6971 8 หลายเดือนก่อน

    Hi Marti!

  • @denaratliff2721
    @denaratliff2721 9 หลายเดือนก่อน

    I understand. Diagnosed in 2007. I communicate with you on IG,about TN.

  • @lifewithjenniferb
    @lifewithjenniferb 9 หลายเดือนก่อน

    Thanks for the video Marti!!!! MS can be such an isolating disease as you feel no one will understand your feelings, your concerns, your pains, and your outlook. Thanks for being so honest and transparent on the struggles. You are AWESOME!!!

  • @HEAVENLYSTARTAROT
    @HEAVENLYSTARTAROT 9 หลายเดือนก่อน

    Hello Marti, I was drawn to your video Tonight Even though I don't suffer from your same MS medical issues, in many ways I can resonate with your pain, just wanted to thank you for sharing your story and I'm send you much love and light and pls continue to share, in many ways which you may not even be aware of at this moment you are truly helping many,many people in the world 😇💫💫💫

    • @MartisMSLife
      @MartisMSLife 9 หลายเดือนก่อน

      You are so kind thank you for watching! I hope your pain is gentler today mama

  • @naturallydope6971
    @naturallydope6971 9 หลายเดือนก่อน

    Very relatable

  • @sarahlabbett4626
    @sarahlabbett4626 9 หลายเดือนก่อน

    Did the surgery work ?

  • @naturallydope6971
    @naturallydope6971 9 หลายเดือนก่อน

    Honestly Marty, I Miss me I've never been to a beach before and for my 44th birthday.I was supposed to come to California angd go to Napa Valley vineyard. Well, it didn't play out too well for me because I've spent most of my time in the hospital. My therapist tells me I'm in a grieving stage and I say to her when will it go away and she said it's just something you don't have to process and work through and and I have so many things I want to do my daughter will be 21 in April and I was like we're gonna go on the trips and I see people walking freely. Makes me sad 😢

  • @naturallydope6971
    @naturallydope6971 9 หลายเดือนก่อน

    Enjoyed listening to your podcast.

  • @naturallydope6971
    @naturallydope6971 9 หลายเดือนก่อน

    Hello fellow Warrior thank you for sharing your story it means a lot because sometimes we are not hurt only seen

  • @brookeslick6362
    @brookeslick6362 9 หลายเดือนก่อน

    As a fellow TN patient, I remember your story well. Can't believe it's been 4 years already! I can relate to the urgency and psychological breakdown that comes with TN pain. Making coherent decisions while in that state of mind is rough. Anything to get rid of the pain! That's when we have to lean into the trust we have with our docs to make smart decisions for us when we can't think through the pain. When they fail us, and we become just a number and not a human being, it's difficult to shake the betrayal. What I do know, is that experience seemed to be a turning point for you. At the time, you were new to the MS sphere and still finding your way. Look what you've done since!! You've become a guiding voice to the MS and TN community. You should be very proud of the contribution you're making. 😊

    • @MartisMSLife
      @MartisMSLife 9 หลายเดือนก่อน

      @brookeslick6362 Hey my sister!! You were and still are such a resource when it comes to things TN I hope you're managing your symptoms as best you can. You are so right this experience changed my whole life for the better I feel. What a road we have been on thank you so much for your sweet words

  • @lifewithjenniferb
    @lifewithjenniferb 9 หลายเดือนก่อน

    Marti it’s so good to see you, MS is quite a trip. I haven’t dealt with nearly as much as you have. However this journey has taught me so much. Especially realizing how much doctors don’t know and how much more research and analysis we do in comparison to them. I’ve had a few intense reactions to meds that were supposed to help me. I once took Baclofen two days in a row and ended up in an extreme vomiting situation where I thought I was gonna end up in the hospital. I’m so sorry you’ve gone thru so much, but I hear you and I completely understand, and I will do my best to send you good vibes and prayers often 😊

    • @MartisMSLife
      @MartisMSLife 9 หลายเดือนก่อน

      I always say we have to be ACTIVE patients speak up ask questions and do the research. I hate that you had such a bad reaction to the Baclofen

  • @franchescasowunmi1394
    @franchescasowunmi1394 9 หลายเดือนก่อน

    Hello there, I do think that dating in 2024 is difficult, I’m newly divorced, and now back on the dating scene, and it gives me anxiety, plus I too have MS(diagnosed 7/2023) and walking with a walker 🤦🏽‍♀️🤷🏽‍♀️ I pray that your forever person finds you soon🙏🏽

    • @MartisMSLife
      @MartisMSLife 9 หลายเดือนก่อน

      Hoping your symptoms are gentle today and I hear you mama hoping for us both!

    • @naturallydope6971
      @naturallydope6971 9 หลายเดือนก่อน

      Dating over 40 with a chronic illness newly diagnosed in March 2023 almost a year ago I can honestly say it is very scary I don't feel like most guys will not date me because I think that I'm handicapped and I'm not I have a rolllate walker thank God I'm not in a wheelchair yet but dating has been very discouraging.

    • @MartisMSLife
      @MartisMSLife 9 หลายเดือนก่อน

      @@naturallydope6971 it's so challenging! I wish I had the answer but I know our person is out there we just have to keep the faith! Hope your symptoms are gentle today

    • @naturallydope6971
      @naturallydope6971 9 หลายเดือนก่อน

      ​@@MartisMSLife Thank you for the encouraging words! My symptoms are different every day LOL. I'm trying not to give it that much weight although I haven't been on a date in about 3 years almost way before I got sick I just took this sabbatical with myself and chose to take this celibacy journey and sit down with myself not knowing the storm was ahead of me. I would love to stay in touch with you I am on Instagram as well and I try to friend you but it's saying no page found so I'm not sure about that.

    • @MartisMSLife
      @MartisMSLife 9 หลายเดือนก่อน

      @@naturallydope6971 just found you mama! Definitely stay in touch! Thank you so much for listening and commenting 🧡

  • @naturallydope6971
    @naturallydope6971 10 หลายเดือนก่อน

    I can definitely relate with you with challenges for the month of January it just seemed like it all fell in my lap Aint going back-and-forth to the doctors in regards to my multiple sclerosis it's been quite depressing to say the least

    • @MartisMSLife
      @MartisMSLife 10 หลายเดือนก่อน

      Im sorry to hear its been a rough start for you as well. Sending you love

  • @rowinablanco2131
    @rowinablanco2131 10 หลายเดือนก่อน

    Blessings 🧡🙏🏻 you such an inspiration to all MS patients

    • @MartisMSLife
      @MartisMSLife 10 หลายเดือนก่อน

      Thank you so much mama

  • @deshun538
    @deshun538 10 หลายเดือนก่อน

    My husband left after the nurses and doctors told us what M.S is

  • @deshun538
    @deshun538 10 หลายเดือนก่อน

    Thank you for sharing. I found out about my MS in 2019

    • @MartisMSLife
      @MartisMSLife 10 หลายเดือนก่อน

      I hope your symptoms are gentle these days 🧡

  • @drsknalisdc
    @drsknalisdc 10 หลายเดือนก่อน

    Congratulations.Your speech was good.❤

    • @MartisMSLife
      @MartisMSLife 10 หลายเดือนก่อน

      Thank you 🧡

  • @elt9811
    @elt9811 ปีที่แล้ว

    ❤❤❤

  • @naturallydope6971
    @naturallydope6971 ปีที่แล้ว

    I am so glad I found your channel 🧡🧡