HOH

Join the Conversation on
HOH
264 people
0 stories
14 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in HOH
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    I need #Prayer

    Hello, I just joined. I’m Laurel.

    I had #Surgery on Wednesday for a #Cataract in my right eye. I had surgery on my left eye 2 weeks before. I have #Fibromyalgia , #chronicvertigo , #Deaf left ear and #HOH #HardOfHearing in my right ear, #MDD , #Anxiety , along with many other medical issues. My left eye was nice & easy. My right eye got a scratch on it in the first 24 hours, It has yet to focus. I have antibiotic eye drops along with the 2 anti-inflammatory drops. So many drops!

    I want my sight back so I can drive our daughter around. We #adopted our 2children from Russia in 2004. Our daughter has #FAS (fetal alcohol syndrome). She is afraid to drive, so she still lives with us. Without sight, even with glasses, I can’t drive Gabby around. Please #Pray for my sight to become sharper.
    Thank you 😊

    Post

    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

    Post

    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

    Post

    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

    Question

    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

    Question

    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

    Question

    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 🚘🚫

    Post
    See full photo

    So annoying

    When non chronically ill people offer their unwarranted (and most times useless) suggestions it really grinds my gears 😡😒 until you've lived a day in MY body with MY mind don't tell me how kale or some "super" food can cure me.. don't tell me how your moms best friends cousin tried *useless suggestion* and it worked for them.. and definitely dont send me a link to an article with no medical relevance or proven results. I have CHRONIC illnesses that I am stuck with for the rest of my life and I'm preeeeetty sure I know MY body better then anyone (even the Dr's sometimes) so yeah thanks but no thanks #Spoonie #chronicillnesswarrior #Migraine #MenieresDisease #bilateralmenieresdisease #ChronicPain #ChronicFatigue #HearingLoss #HardOfHearing #HOH #Anxiety #Trichotillomania #Asthma 🤔🙄

    Question

    How do you feel about being asked about your mobility aid(s)? And how do you respond?

    When you're young with invisible illnesses people tend to make assumptions about your health. When you have rare illnesses you often have to educate family, friends, and sometimes strangers about your conditions. In public people stare or give you that "idk what's wrong with you but I feel sorry for you, forced smile". People assume that whatever is "wrong" with you that it "can't be that bad", I mean its not cancer after all (I hate hearing that) 😒 The few people that have asked me directly about me using a cane have been family members and haven't exactly gone about it in the best way. 😡🙄 I've also come to find out most people tend to ask my mom instead of asking me.. and she just sends them a link on Ménière's so they can read up on it themselves 😅 I don't mind answering questions about my mobility aid or my conditions as long as I'm asked in a respectable way.. why do people find that so hard to do?? #Spoonie #InvisibleIllness #MenieresDisease #bilateralmenieresdisease #ChronicPain #ChronicFatigue #HearingLoss #HardOfHearing #HOH #Vertigo #imbalance #dizzy #Mobilityaid #Cane