Hearing Loss

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    Community Voices

    Stapes surgery: your thoughts/experience
    #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

    I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
    #Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

    4 people are talking about this
    Community Voices

    My tinnitus and an unintentional experiment.

    I'm 64 and I've been plagued with tinnitus for as long as I can remember. I have hearing loss in both ears of the moderate to severe range. My sounds resemble a piercing shrill, the woods alive with crickets and the hum of a diesel tractor outside my window.
    Recently I went away for a week to visit my daughter and I was home alone all day with her 2 pets while she and her husband worked. For a week ! It was blissfully quiet. I checked in with my ears a few times when I realized they were silent. Silent !
    I live in a 28'camper with my spouse. My daughter's house has a two story vaulted ceiling. The acoustics were amazing.
    The first thing I noticed when I returned home to my little camper was the low loud hum in my left ear. Wow it's back just like that.I want to mention I have a variety of stress ills, cptsd, anx,dep..
    So what was different at my daughter's house ? Lack of stress, lack of cannabis (I do the medical kind and it works for me), or the acoustics ? I have my shrill whistling back now, going on 5 days straight😤#Tinnitus

    1 person is talking about this
    Community Voices

    ☆ " The Viking Princess With A Pure Heart Of Gold " ☆ #Poetry #self -Image

    ☆ " I'am Only Nice To Other's Who Are Kind And Nice Back... I Will Alway's Help Someone In Need.. I Will Alway's Put A Smile On Other People's Face's... To Brighten Thier Day... I Love To Learn About All Mental Health Issue's... That Other People Go Through.. And Make It My Mission To Understand And Learn More.. To Help Them Become Better Reflection's Of Themselve's.. I Have Alway's.. Had This Need To Just Help Other People.. It All Started When I Found My Father Half Way On The Floor.. He Was At Time Dying From Cancer... I Put Him Back Into Bed.. At The Age Of 6 Year's Old... But Sometime's I'm Weary Of People Alway's Trying To Take Advantage Of Me.. I'm Not Nieve Maybe When I Was Alot Younger... Now I Just Don't Trust Anyone Anymore Especially Men... I Will Alway's Be On Guard With My Emotion's And Feeling's... I May Take Time To Be Fully Open With People... It's Definitely Harder To Keep All Of My Mental And Physical Health In Line... People Alway's Assume That I'm Just A Mean Grumpy B****.... All The Time.. That's Just Not True.. I Live With Chronic Pain..Memory Loss.. Hearing Loss And More.. But I Put On A Happy Face To Really Hide My Pain.. Nothing More... All That I Really Wish And Ask Is To Be Understanding..Kind..Patient"☆ Sincerely, " Your Mighty Viking Princess " ☆ SKADI ☆ #Poetry #self -Image

    2 people are talking about this
    Community Voices

    Gotta catch ‘em all

    The last few weeks have been particularly hard on me.

    Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

    I’m being referred to cardiology for a tilt table test.

    In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

    I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

    They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

    My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

    It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

    And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

    Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

    I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

    Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

    #ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

    2 people are talking about this
    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?

    6 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

    4 people are talking about this
    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 ????