bilateralmenieresdisease

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    MiaB

    FINALLY!!!!!!!

    It has been a looooong time coming and I just had to come share the fantastic news with you guys!! I woke up yesterday morning to some confusing news about changes to my food stamp and Medicaid benefits.. I received a notification that my Medicaid would be active until November 2020 and effective June 1 there will be a decrease in my food stamp amount due to a change in income. Naturally I was completely lost because I literally have NO income! Lol. So something in my head said to go login to my account on the social security site and lo and behold my disability had FINALLY been APPROVED!!! When I say my heart nearly jumped out of my fucking chest!!!!! I was ecstatic and so overwhelmed with joy. I initially applied back in 2018 when I became to sick to work anymore and became 100% dependent on my mom financially and for my care. It has been a looooong and very rough road waiting for my disability and adjusting to the life changes that came with chronic illness. I got a denial in 2019 and became so discouraged but I appealed it and found a good disability lawyer ASAP. I am so thankful for my lawyers for fighting for me and for my mom and daughter who have been there every step of the way! If anyone out there is feeling down and overwhelmed by the terrible, broken process to get disability benefits, DON'T GIVE UP!! Be patient but KEEP PUSHING and advocating for yourself!!!! It's not easy but it's definitely worth the fight! #Disability #ChronicIllness #InvisibleIllness #Anxiety #Asthma #Migraine #ChronicPain #ChronicFatigue #MenieresDisease #bilateralmenieresdisease #Vertigo #imbalance #Tinnitus #HearingLoss #HardOfHearing #HOH #Cane #Mobilityaid

    16 people are talking about this
    Community Voices
    MiaB

    Hello Again Bronchitis

    I had a terrible cold for over a week that just would NOT go away smh. It kept getting worse and worse until I finally decided to drive myself to the urgent care. I did the little online check in before leaving home (as I've been there many times before and know how long the wait can be). So I get there check in at the kiosk and take a seat, about 10mins goes by and the lady at the front desk calls me up to ask which type of insurance I have, I let her know it's still the same and she tells me they no longer accept my insurance there 🙄🤬 talk about pissed! So I go out and drive myself to the hospital so I can be seen at the ER. By this time the sun has gone down and I'm coughing like crazy but my luck changed because when I get to the ER it happens to be a shift change and there's literally no one in the waiting room! They got me checked in and to the back in less than 10mins. Now I had never been to this particular hospital so of course I had to give the usual medical history rundown and long list of medications I take. But finally I get seen and told that it's not the flu, it's bronchitis, at this point I'm just thankful it's not pneumonia. Having asthma can be a pain especially during flu season because getting respiratory infections, laryngitis, pharyngitis, pneumonia and just about any "lung" related illness you can think of sometimes becomes the norm unfortunately. And to add to that the exacerbation of one chronic illness then usually leads to the exacerbation of another, so my Ménière's has been flaring like crazy and I can't hear shit besides my horrible tinnitus and I've been as dizzy as a baby deer stumbling around. I'm hoping I'm better soon.. I've been stuck in bed for days and everytime I think I'm feeling better I end up over exerting myself and end up right back in bed. Not to mention stressing myself out about an upcoming neurology appointment that already had to be pushed back once and a number of other "life" things I'm dealing with currently. I feel like crap and I'm just ready to be "better" again. 😫😫 #justventing #Anxiety #stressed #fluseason #Bronchitis #chronicasthma #MenieresDisease #bilateralmenieresdisease #vestibulardisorder #innereardisorder #ChronicPain #ChronicFatigue #HearingLoss #HardOfHearing #HOH #Tinnitus #Vertigo #dizzy #nausea #imbalance

    8 people are talking about this
    Community Voices
    MiaB

    For those of you on disability would you mind sharing your experience regarding the process?

    I initially applied for disability a little over a year ago.. at that time I didn't have all of my illnesses diagnosed so I applied with the knowledge I had at that time. I updated Social Security with my new diagnoses but somehow it didn't get input properly and I received a denial this past October, with the option to file a request for reconsideration on the grounds that my full medical history hadn't been properly reviewed. Not long after that I retained a lawyer because I was told by multiple people including my father that that was the best option if I had any hope of my case being handled properly. Fast forward 3 months and there doesn't seem to be any progress. I've been sent a couple of different packets of paperwork that I had to complete and send back but everytime I try to get an update there seems to have been no progress made. Can some of you tell me about your experience going through the process? Did you receive any denials if so how many? (I keep hearing you'll get denied twice before they approve you 🤔) Also, what state do you live in? Did you use a lawyer or go it alone? How long did it take from your initial application to get approval? Did you receive any back pay? Is there any insight you can offer? Thanks 🥰 #InvisibleIllness #Disability #SocialSecurity #MenieresDisease #bilateralmenieresdisease #ChronicPain #ChronicFatigue #HearingLoss #HardOfHearing #Anxiety #Migraine

    69 people are talking about this
    Community Voices
    MiaB

    My Ménière's has been giving me hell.. despite my best efforts to "manage" it, my symptoms have been increasingly worst. It has me so anxious because it was REALLY bad at the start of last year to the point that I could barely function with constant vertigo attacks, nausea, and vomiting I lost so much weight and even had hair falling out. My ENT requested I start back keeping a symptom journal in hopes that we can determine which ear is causing the most trouble (bilateral Ménière's problems 🙄). For those of you that have had surgery for your Ménière's which type was it? Did it work/make a difference for you? Any information will be helpful 😕 #ChronicIllness #InvisibleIllness #MenieresDisease #bilateralmenieresdisease #vestibulardisorder #innereardisorder #HardOfHearing #HOH #HearingLoss #Tinnitus #Vertigo #imbalance #dizzy #nausea

    2 people are talking about this
    Community Voices
    MiaB

    For those of you with Ménière's disease, what courses of treatment have you tried? Have any of you had surgery & if so what was the outcome??

    So prior to my ENT appointment this morning I had been really anxious for some reason. I get there today and it's pretty routine.. the usual dialogue between myself and the nurses, as well as, my Dr. Of course he wanted to know what has happened, changed, etc since my last visit. I currently have a regimen of the "usual" Ménière's treatment of low sodium diet, no caffeine, diuretics, anti nausea meds, vitamins.... long story short, although helpful I still am experiencing debilitating symptoms, especially with my hearing loss and vertigo. My Dr requested I start my symptom journal again to determine which ear is the "PRIMARY" culprit (since I have bilateral Ménière's) ..he thinks surgery may be the next step for me but wants to be positive my migraine symptoms aren't overlapping (my neurologist just put me on Aimovig after a terrible experience with Botox). Needless to say that wasn't what I was expecting to hear.. so in 3 months we'll followup and see if he needs to refer me to his team of surgeons. The only surgery I've ever had is oral surgery, when I had my wisdom teeth pulled and the longest hospital stay I've ever had was when my daughter was born almost 14 years ago. I'm terrified to go under the knife but if it can be beneficial to my health then I'll just have to suck it up and deal. Any info on you guys' personal experiences would be helpful and hopefully somewhat comforting 😬 #MenieresDisease #bilateralmenieresdisease #ChronicIllness #InvisibleIllness #vestibulardisorder #innereardisorder #ChronicPain #ChronicFatigue #HearingLoss #HardOfHearing #HOH #Vertigo #nausea #dizzy #Tinnitus #imbalance #Anxiety

    2 people are talking about this
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    MiaB

    How do you feel about using your mobility aid in certain situations?? More specifically ones where there could potentially be discrimination

    I'm not at all ashamed of using a mobility aid however, I think people do make assumptions when they see me. I have a job interview tomorrow.. I know it will be hard on my health but I've been out of work for a year now waiting on my disability case putting a big strain on me and my family financially. Long story short, I went on an interview awhile back (clearly I didn't get hired lol) but it was really uncomfortable because when the woman came out to get me the first thing her eyes went to was my cane.. then the three women conducting the interview kept staring at my cane throughout the whole thing. I'm almost sure one of them wanted to ask me about it (she was staring the most out of them) but of course legally she couldn't just come right out and say anything. I was more than qualified for the position and the interaction between myself and the recruiter changed drastically once it was known I use a mobility aid. Now it could have very well been that they found someone more qualified, but I couldn't help but think my cane had something to do with their decision. Maybe they thought I wouldn't be able to handle a "fast paced" environment. I'll never know, but I can't help having that thought in the back of my mind that it was because they think I wouldn't be capable. Now I'm getting all anxious about this interview tomorrow and I'm about to drive myself crazy. #ChronicIllness #InvisibleIllness #Anxiety #MenieresDisease #bilateralmenieresdisease #vestibulardisorder #innereardisorder #HearingLoss #HardOfHearing #HOH #Tinnitus #Vertigo #imbalance #dizzy #Mobilityaid #Cane

    Community Voices
    MiaB

    Have you had to stop driving due to your condition? If so, how are you coping?

    I went from driving EVERYWHERE to barely being able to make it down the street to the pharmacy. If someone told me a year ago that I'd be as "dependent" as I am now I wouldn't believe them. In literally just over a year I've had to make so many changes due to my multiple chronic illnesses. I have increasing difficulty doing some of the simplest things like showering, getting dressed, cooking meals... (the list goes on) but I never expected or even thought about not being able to drive myself. Due to the unpredictable attacks associated with my Ménière's it's not safe for me to drive.. but even riding in a car is difficult because I now get car sick so easily and if it's a long ride I suffer due to my chronic pain. Who else has had to give up driving? #ChronicIllness #InvisibleIllness #MenieresDisease #bilateralmenieresdisease #vestibulardisorder #innereardisorder #HardOfHearing #HOH #Tinnitus #Vertigo #nausea #carsickness #Migraine #aura #visualdisturbances 🚘🚫

    20 people are talking about this
    Community Voices
    MiaB

    Do you work a "regular" job, get disability, or work for yourself?

    Before I stopped working it had become increasingly difficult for me... having attacks at work, missing work because I couldn't get out of bed, having to take medical leave. If any of you know firsthand, the process of applying for disability is long and drawn out. So I'm at the point where its it's either find a different career path that I am able to do or wait out my disability case, either way I need something to happen soon because believe it or not, I need money to survive and take care of my family. So I have an upcoming job interview for a bank (I have experience in the finance industry) and I am terrified. If I do get the job we all know there's that 90 day wait for health benefits.. and you have to wait a year for FMLA.. idk what I'll do in the meantime if I have any health issues. We all know how unpredictable chronic illnesses are. A lot of people keep telling me to look into work from home jobs but a lot of those are call center type positions (which I also have experience in) but may prove difficult with my hearing loss (and fluctuating hearing). I just feel so overwhelmed.. my migraines, Ménière's, chronic pain, and anxiety are farrrrr from under control but I don't have many options at this point. What do you guys do? #InvisibleIllness #Disability #Anxiety #MenieresDisease #bilateralmenieresdisease #vestibulardisorder #innereardisorder #Migraine #HearingLoss #HardOfHearing #Vertigo #imbalance #dizzy #Tinnitus #nausea

    39 people are talking about this
    Community Voices
    MiaB
    Community Voices
    MiaB

    Physical therapy days are hard

    <p>Physical therapy days are hard</p>
    13 people are talking about this