Hearing Loss

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    Community Voices

    So frustrated trying to find employment!

    #MenieresDisease First of all I am frustrated of my diagnosis which I really don't have one except for that I have a vestibular disorder. My original diagnosis was Meniere's disease but because my hearing loss seem to be too sudden they disregarded that diagnosis. But yet all of my symptoms point towards it. I had extreme vertigo everyday with my hearing loss, constant tinnitus, unsteadiness, extreme nausea with vomiting and extremely fatigued. This all started in 2016. I could not work for 6 years because of this debilitating disease and yet I couldn't receive disability benefits either because nobody could give me a diagnosis!

    My symptoms have finally gotten to the point that I only have episodes in which they last two to three days and they come on about every 2 to 3 months, or with extreme changes in the air pressure due to storms. Living in Florida we have storms all the time so I'm finding myself having them more often during rainy season. I used to have a career as a Credit Analyst underwriting commercial loans with a degree in finance. Since I started feeling somewhat better in the last year and just having episodes I figured I could return to work. I accepted a position as a Title Processor and was very excited and eager to learn the business. It felt great being able to get up in the morning and drive to work and be a productive person in society again, however my episodes caused me to miss work three days at a time every couple of months because I was so dizzy from the vertigo that I could not drive a vehicle nor could I concentrate and the nausea was so bad with extreme fatigue. Oh and it has also caused my eyesight to be very poor as far as depth perception especially at night. I'm very unsteady when I walk I always look at the ground and find things to hold on to. Loud noises make me very tense and jumpy. It feels like a bolt of lightening going through my entire body, but only when I'm having episodes. I also noticed my anxiety gets really bad and I get really sweaty. And because of these feelings that I get I tend to get very irritable. Everything was going great at my new job as a Title Processor until I had to call off a third time for 3 days in a row because of my episodes. When I return to work I also had a day that I felt on edge and snapped at somebody. I didn't mean to and I know they don't know what I'm going through but it's extremely frustrating to me that people can't see what I'm going through and how I'm feeling. You can tell them anything you want about your disease however they don't care because they can't see it and I've had a lot of people not even believe me?! My boss thinks that I could just take a pill and it'll go away. She actually said that to me. Again, very frustrating. Ultimately they let me go after working there 11 months. And even got a raise after the first 6 months I was there. I was never late to work but I did have to leave early one time because I felt an episode coming on and wanted to make sure I got home okay. Very embarrassing.

    I found another job with a different Title Company within a week after being let go. This one only lasted 2 months even though I drove when I shouldn't have and worked through my episodes. I made sure I was to work early and I stayed the full time and never left early, even on my bad days. I thought this would alleviate me from losing my job again. However, I was having an episode day and was very tense and on edge and apparently I sent an email to an underwriter that was inappropriate or as they said "not professional." All I wrote was, " in this case, the trust prevails over the court proceedings in the death of...." Somehow this was interpreted as an unprofessional comment and I was let go because of it?! To me, I was merely just stating a fact, but because I didn't have empathy in my sentence I was fired for it. I'm sorry, but nobody seems to have empathy for me and what I go through every day. So I guess I don't know how to be professional anymore because I have no empathy? I guess I don't. So now I've been unemployed for a month and still can't get disability benefits, possibly unemployment but that doesn't pay anything. At least not enough to pay my rent, food, car insurance, Etc. Unemployment is a joke but yet we have to pay into it. And disability is kind of a joke too! I know people that get disability benefits that don't even need them and here I am suffering every day especially my first 6 years that I was so sick every single day and couldn't get anything?!

    Again, I loved my job as a Title Processor, especially after not being able to work for 6 years! But because nobody understands that I'm going through nor do they care I cannot have a career in this field. I have recently taken up a very labor intensive job doing commercial cleaning for restaurants. I'm trying to work nights from 12:00 a.m. to 6:00 or even 7:00 a.m. These hours are the worst and my fatigue and physical abilities do not allow me to do this work, however I'm doing my best and I actually had to leave after my second stop when I still had one more to do just because my body could not do any more work. I was very dizzy, light-headed, nauseous, and fatigued, and I could not walk well because of my balance. I felt like I was going to fall to the floor. They allowed me to go home but I'm afraid I'm going to end up losing this job as well. A labor intense job is not a good job for somebody who has this disability. And with this job I only get one day off a week. As I'm writing this I'm dreading the fact that I have to go in to work in a couple hours. Whereas when I worked for the Title Company I was excited to go to work. Now I'm extremely depressed, anxious, and scared of when the next episode is going to come on and I won't be able to work or drive my car. I'm starting to feel extremely hopeless to the point that I've isolated myself from people. I feel like a huge failure! I have been told in the past while being very sick that I need to get over myself, also been told that I'm crazy and delusional. These words are very hurtful as they have no idea what I go through everyday and the struggles I have to go through to be productive person in society again. These people need to be educated and more aware of these invisible diseases. People are just ignorant anymore and not tolerable of anything. So how does somebody with this disease function in society? I've been trying everything I can but can't seem to get it right.

    So exhausted and frustrated!

    Does anybody have any ideas for a job that is going to pay a decent salary that I can actually do?

    3 people are talking about this
    Community Voices

    TGIF! This week was so long. And, if I am being honest...it sucked. I have been slapped with the realities of what my injuries from my fall look like back in my work environment. It has been really hard on me to not feel like I am able to do things at levels I once was. I feel like I am unable to trust myself to make certain important decisions and am experiencing diminished confidence because of that. I feel I am not doing enough to help some students and feel overwhelmed by way too many factors beyond my control. These things make me more on edge and/or sometimes short tempered. I do not like that feeling and probably haven't been the easiest person to be around. So many times since school started again, I have felt like a burden from having to ask so many questions multiple times because I don't remember the answer or even that I asked already. Sometimes that even includes after I have written it down somewhere. I have been feeling really embarrassed by not being at the level I want to be, wish it wasn't taking longer than normal to learn student's names, etc. Learning how to do things in new ways, figuring out systems and tricks to help myself out, and feeling all the things has definitely exhausted me. Being a frustration crier always stinks too!

    I guess the silver lining has been that I can understand more than ever what some of my students experience as they try to navigate their disabilities.

    14 people are talking about this
    Community Voices

    Uphill battle

    Bit of struggle again.

    My hearing is going again. The doctor doesn’t seem bothered because it’s not blocked and doesn’t look infected, and said to come back if it continued. It’s already been a month with it and it’s not gone away. Its incredibly frustrating when it goes. Its disorientating. And surely no visible cause is concerning? Especially given I haven’t made it a year post-op yet.

    My heartburn and acid reflux have taken a sudden turn for the worse, around 5 years into suffering with it. I was almost constantly taking gaviscon over the last few days after I came back from my holiday, so I booked an urgent appointment because I couldn’t live like it when it was affecting my sleep too. I’ve got a prescription and they want me to have a OGD. I don’t really see why, because it’s genetics.

    I also caught covid again. I went out to a concert and that’s all it took. I however kept testing negative from the Tuesday I first was symptomatic, until the Saturday when I finally tested positive. The one time I went out somewhere that had a lot of people. (Disclaimer: I am fully vaccinated, have the booster and I had covid before (another disclaimer: back when the vaccines weren’t around and my entire family were basically key workers)).

    Also had a bunch of other minor illnesses and general conditions/ chronic pain I have getting worse. I think it’s gonna be sick girl summer.

    #ChronicPain #BackPain #HearingLoss #GastroesophagealRefluxDisease #Heartburn #AcidReflux #COVID19 #Postop #ill #hardtimes

    2 people are talking about this
    Community Voices

    Another medical adventure

    So I now have hearing loss there trying to reverse...its from an ear infection and been getting steroid injections in ear drum not fun go fourth Monday having a lot of vertigo on top of my dysautonmia which is hell in summer months specaly here where it's triple digits the vertigo got me nauseous and miserable if it's not thing another but spirits bright trying to enjoy little things like some self care a pedicure but feeling lost cause the disequilibrium make focusing and functioning hard any advice as to what you do when it seems like the hits keep on coming I'm positive but it feels like it's fleeting don't want to start a pity part but after all I've been through it seems prevalent thanks for the support

    Monika Sudakov

    4 Things I've Learned About Disability Accessibility as a Small Business Owner

    When my husband and I purchased our bed and breakfast in 2005, we deliberately sought out a property that was already in business with the knowledge that an existing inn would already have gotten any licenses and permits necessary to comply with all necessary laws and regulations, including those regarding accessibility. While this was true to an extent, as the years have gone on, some laws have changed and the simple act of encountering guests of varying needs has forced us to adapt our accessibility accommodations. The following are some of the things we have learned that have informed how we do business and have made us better hosts to all of our guests regardless of their disabilities or unique needs. These are factors that any restaurant or inn might consider so that they can accommodate the greatest number of clientele possible. 1. Layout. I understand that the bottom line for any business is profitability, but sometimes, maximizing profitability isn’t what’s best for customer service. Cramming as many guests in as possible seems like the best way to turn a profit in a business where margins are already slim. But having tables crowded too close together poses a number of issues regarding accessibility. First, the obvious issue of not leaving enough space between tables is the ability of someone in a wheelchair to navigate between tables, particularly when every chair is full. Second, having tables too close together can be a noise issue. For those with noise sensitivities or hearing loss, the ability to socialize with others at their table without the disruption of ambient noise and overhearing everyone else’s conversations is a huge issue. And finally, in today’s world where COVID is becoming endemic, it makes good epidemiological sense to spread tables out, enabling good airflow and the social distancing needed to make dining out less of a dangerous activity. I can see you counting dollar signs and wondering how you are supposed to offset lost revenue by limiting the number of tables. Fewer tables mean less staff, and each staff member can handle a slightly larger station. And I’d argue that people are willing to pay a little more for a more comfortable ambiance. Creating better flow is good business because it’s responsible business practice. 2. Good communication regarding dietary restrictions. I’ve written extensively about accommodating dietary restrictions being good business and have contributed several articles including recipes focused on different types of dietary restrictions and accessibility needs. But I haven’t discussed the challenges of getting the correct information that I need to be able to insure that not only are you safe, but your meals are delicious. Part of this is on me, or any employee working in the hospitality arena. I ask about dietary restrictions both online during the reservation process and over the phone when taking reservations, but I don’t always make clear that dietary restrictions aren’t just allergies or intolerances. There is a myriad of considerations that I personally want to know, including likes/dislikes. The last thing I want is to feed you poached eggs when you hate runny eggs. That’s something that I could have easily adjusted with the correct information. But there’s a more nuanced aspect of dietary restrictions that for some reason has been harder to get clear instruction on, and that is food sensitivities having to do with neurodivergence including autism and sensory processing disorder. I have in the past had teenagers and young adults who require very specific types of foods, textures, and temperatures, and need individual ingredients separated so that they don’t touch. I am more than happy to accommodate this type of request as it’s important to me that everyone be able to dine with us. However, I find that would-be guests are less likely to bring this kind of request up specifically and instead dance around the issue. I suspect that too often they are met with suspicion or judgment of some kind, which makes me sad. My earnest request for these individuals is to be upfront. There’s absolutely no shame in asking for these needs to be met, but I’m not a mind reader, and if you aren’t specific, I may not realize the context of what you are requesting. The bottom line: regardless of what the request is, please be upfront, clear, and ask. In almost every case, if I am able to, I will go out of my way to accommodate you and your loved ones, but it takes two to tango, so I’ll need you to be my partner in getting your needs met. 3. Education. I admit that as the years have progressed and I’ve encountered more and more guests with varying accessibility needs, I have had to do the necessary research to educate myself on each particular situation and condition. Part of my ongoing awareness has been connecting with those in the Mighty community. I’ll be the first to say I’ve made my fair share of mistakes based on my lack of knowledge and understanding. I am humble enough to say I was wrong or acting out of some kind of implicit ableism thanks to my own privilege. While it’s nobody’s job to teach me, my true desire to give people the greatest possible hospitality experience has offered me the opportunity to listen and adapt. For example, the types of different diets and food protocols that individuals are utilizing to manage chronic illness have expanded exponentially. Where it used to be a single ingredient or a handful of ingredients, like gluten-free or dairy-free, the list now includes things like Low Fodmap, Paleo, Keto, and Autoimmune Protocol. I know many people think these types of diets are fads and view them with some skepticism, but I personally have witnessed the beneficial impact these diets have had on others, so I have made it my mission to become an expert in each one and to refresh my knowledge every time these guests come to dine or stay with us, adjusting as new information is added. Again, everyone deserves to experience fine dining, regardless of their needs. 4. Evolution. I’m not talking about Darwin here, although I do believe that in business, today more than ever, it’s survival of the fittest, and those who can evolve and adapt can continue to succeed. COVID certainly proved this point where hospitality has been concerned. As I’ve mentioned, we’ve been in business for 17 years. When we first got here, a basic website and a handful of listings on online directories were all we had to deal with where online presence was concerned. Over the course of the past several years, we’ve had to expand our marketing to include all kinds of social media and digital content, and have had to rebuild our website numerous times, most recently to accommodate changes in requirements for websites to be accessible for the visually impaired. This is the type of evolution I’m talking about…something that I hadn’t considered but that absolutely makes sense and is the right thing to do. Other considerations have been how we could accommodate wheelchairs in our dining room, even though all of our guest suites are on the second floor and due to the historical nature of our property (it was built in 1854) we were not required to make any additional changes based on ADA requirements. While certainly not ideal, we have utilized temporary ramps that enable our guests in wheelchairs to dine with us. Additionally, we have added support railings to our front entrance, have two showers that are walk-in showers rather than shower/tub combos, and have put refrigerators in all guest suites to accommodate guests needing to refrigerate medication. They are small things, but as situations arise and we figure out how to implement changes that are not cost-prohibitive, we make them. We are always a work in progress, but the goal is to make progress and consistently expand our ability to serve as many individuals from as diverse a cross-section of the population as we can. Part of this includes safety and comfort for those with disabilities of all kinds. We listen, we pay attention, we learn, and we adapt. That’s the best any business owner can do, but it takes a conscious effort and a desire to commit to viewing running a business as more of a holistic practice.

    Community Voices


    hello my name Alyssa 33 year old from Vero beach Florida born with #ChargeSyndrome and back in 1987 when i born i couldn’t breathing my doctor couldn’t figuring out why i turn blue realizing my nose i could not breathing out of my nose could not drink milk at all i was mouth with tube in my mouth down my throat tell year later 1988 i start drinking milk in baby bottle got better and tell in 1992 i was 6 year old has my kidney 1 surgery and 1993 at 7 has my nose surgery few time and 1994 at 9 has my ear surgery and tell 1998 has 15 surgery when i was little kids no more surgery ever since I’m very healthy and i have speech impediment was very hard hardly anyone understanding me even taking time to understanding me better now got better as i got older and some #HearingLoss in one my ear and i wearing glasses one of my eye are far sight and near sight and I’m very active always like entertaining do something all the time and I’m only one in Florida has #ChargeSyndrome and i always want to have friend from Florida with #ChargeSyndrome ???? and I’m very nice fun caring kindness thoughtful very friendly outgoing that just me down earth truthful and m very strong never give up nothing can not hold me back I’m proud be different no matter what ????

    Community Voices

    Community Voices

    On Monday, I start another school year. It will be year 13 and the first time I have worked in a little over 7 months.

    I am feeling such a wide range of emotions about it all and so is my body. Today I am in so much pain that it hurts to move. I have barely slept all week long plagued by the nightmares, what ifs, hows, and time will tells that seem endless. I have no idea how the trauma my body has been through will manifest itself from day to day. I have no idea what it will be like to face the reality of the locations I've had flashbacks and nightmares for months of the trauma replaying all while knowing that I'll never fully know all of the details of what happened several months ago.

    The part of getting back into a routine that doesn't just solely include medical appointments and/or therapies is one aspect I look forward to. For months I have felt like I am living in an alternate world. Getting to hopefully see some of the same students I had prior to my injury will warm my heart for sure since I have missed them tremendously. Knowing that I am returning with multiple restrictions in place provides me with some piece of mind that safety is an utmost concern. It strangely also is sparking feelings of a grieving process of the life as a teacher I had pre-injury.

    While I know that I am more resilient than I ever will truly give myself credit for, know that I will be just fine since I have overcome so many trials and tribulations in my career/life, and have a good amount of supportive work family members the nervousness of it all is overwhelming. I am trying to remind myself to not forget to be patient, give myself grace, not to play the martyr role by taking on more than I can handle, and to not allow guilt to rule when needing to advocate for my possible changing needs. I cannot give to others if I am not able to be functionally where I need to be for myself.

    13 is a number that tends to be associated with a lot of superstition. It also represents a coming of age in some cultures and/or religions. Some people consider 13 a lucky number. For me, 13 is a number that I hope brings renewed faith in my abilities no matter what challenges are thrown my way. I hope it brings much calmer and fun times than this last crazy school year. I hope it brings inspiration, patience, and lots of good memories.

    Time will tell!

    1 person is talking about this
    Community Voices

    Superstar Heroes

    Giving birth to my son was such an emotional moment like all births. Being told shortly after that he has a genetic syndrome just by his appearance was even more emotional for me. A few months have passed, multiple specialist later the results were in. My son who we call Aj had a full whole genome sequence study on his DNA and it came back with no real answer. The changes that were found in his DNA had little to no evidence to support them and that made his condition a #RareDisease . I mean extremely rare! As the years came and went Aj was diagnosed with plenty of other medical disabilities. Some were more challenging than others but here are just a few to name; ADHD, Autism, #Microcephaly and more. As a mom I wanted to educate myself as much as possible so that I can help Aj get the best treatments, therapies and at home care I could. I also wanted Aj himself to understand that he had several disabilities. I encouraged Aj to strive like any other child and that his disabilities were limiting him in some areas but if he poured his heart into anything that his outcome would be limitless. I went to the library, book stores and online book shopping trying to find stories that were relatable and could help me explain Aj’s medical conditions without boring him. That was really hard I couldn’t find books that shared more than one condition at a time. So I wrote one! As fist time Author I became intrigued about helping parents, educators, physicians explain disabilities and life in general of a special needs child. I started with a series titled “Superstar Heroes” Aj goes to camp is the first book in the series I have self published this book in both English and Spanish. It is available on retail online book platforms. I have taken the negative and turned it into my positive story . I continue to educate myself, others, Advocate for children with special needs and also Interpret for Spanish speaking individuals so that they can better understand their conditions. Aj goes to camp features 6 diverse children, 6 disabilities with a common goal of inclusion. The six disabilities are Autism, #CerebralPalsy , #DownSyndrome , #HearingLoss /Deaf, #MuscularDystrophy , #RareDisease featuring Aj. All kids have the Cape-Abilities to be the greatest! Support us, spread the word and become a S.W.A.N kid too.

    Community Voices

    × " I Went To The Eye Doctor Yesterday And Got A Shocker But And Answer To My Headache's " × #SlowlySlippingAway #StillKickingIt

    × " Sooo I'm A Hot Mess With Alot Of Stress... Depression...Anixety...Hearing Loss.... Chronic Pain...Multiple Disabilities... Now I Might Be Going Blind.. I'm High Risk For Glucoma In Both Of My Eye's... I Can't Walk I Can't Hear Now I Might Be Going Slowly Blind... But It's Not For Sure But A Possibility.. Apparently My Vision Is 20/40.. But I'm Farsighted. This Is What Sux About Being Adopted No Known History... But I Found One Out And It A Bummer Too. I Feel Like I Don't Belong Here Anymore... And No I'm Not Trying To Do Anything. I'm Just At My Wits End With All The Illenesses That I Keep Discovering Out Of Nowhere... " × #SadnessWithin ☆ S.K. ☆

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