Hearing Loss

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I'm new here!

Hi, my name is Zeeza. I'm here because
I'd like to learn more about my hearing loss and to find support that push me to keep going.#MightyTogether #HearingLoss

3 reactions 1 comment
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I’m new here!

Hi, my name is mtalbot82. I'm here because I have been diagnosed with a plethora of illnesses and I want to learn more and also provide others with information and help when needed.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #EatingDisorder #HearingLoss

12 reactions 3 comments
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Understanding your anger

I definitely get angry sometimes, usually when someone treats me unfairly. I often swear when I’m frustrated, usually when I find something really challenging. I attend online art classes on a weekly basis & the teacher is spoiling it for me by singling me out & making comments. She’s a massive bully really. Today she said I looked odd since I’ve had my hair cut &, she doesn’t want to work with me. She doesn’t want me to swear to at anyone either. The swearing isn’t directed at anyone, I’m just frustrated. That’s why I swear. But I feel humiliated, angry & upset right now. I just want to learn how to draw & paint & she’s sapping my energy & enthusiasm away.

I’ve had my struggles… I’ve learnt how to live with high functioning autism, mild hearing loss & I’m managing M.E & fibromyalgia which were severe. Now they’re mild because I take medication daily & I’ve had alternative therapy including counselling, life coaching, psychotherapy & CBT. Why can’t people just let me be? I am the same as everyone else & have just as much of a right to learn new things as everyone else. I don’t want to quit because I enjoy the classes so much but I think I should turn my video off because the teacher is clearly upset by my presence. Anyone who is deemed as being different is undermined & discriminated against. I feel angry at the injustice of it, it alienated me & segregates me from the rest of the group. Thoughts anyone?

23 reactions 8 comments
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Harder each day

I am struggling with chronic pain. I am still trying to work. Yesterday I was so out of breath I had to go in my office and put my head down to catch my breath. Today I tried a nebulizer treatment but it won't last until I need it. I am getting weaker and more in pain every day 😢 gastroparesis, asthma, chronic pain in left lung, PTSD, BPD, GERD, dyslexia, hearing loss, depression, microvascular angina, pretty much everything wrong with me 😩

10 reactions 5 comments
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Which Way Will Today Go? #HearingLoss #Anxiety

I see the audiologist and my ENT this afternoon for a hearing test and check up. I know I'm losing hearing in my left ear and possibly in my right. I'm kinda hoping that I can get hearing aids but at the same time I don't want to need them. I'm tired of having issues hearing people and the embarrassment around that, but dang it I don't want another thing to manage and deal with. I also don't want another diagnosis that makes me different. Does that make sense.

3 reactions 3 comments
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I'm new here!

Hi,

I'm here becaause my daughter has been suffering FND symptoms for 2 years. Initially numbness and tingling, but symtoms soon moved on to blurred vision, double vision and then blindness, hearing loss, mutism and paralysis of limbs.

FnnD bouts have lasted seconds, minutes, hours, days and even upto 7 months before recovery

One thing that is most common is that smy daughter will recover and go to bed symptom free, but if a new symptom or bout of symptoms occurs it does so when she wakes in the morning.

We are told FND occurs when her stress bucket overfills, because of too much stimulus, but this seems to mostly happen when she's asleep, so is able to cope consciously, but it all seems to fall apart in her subconscious.

Has anyone experienced this?

Looking to widen our awareness of FND, as we currently feel very isolated and even with the help of a pretty good Paediatric Neurology Psychologist, we still feel overwhelming underinformed about the world of FND.

#MightyTogether

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What is it like to lose your hearing as an adult?

What is it like to lose your hearing as an adult? Not older, but in your 30’s or 40’s?

You grow up hearing fine. Communicating in the language you were raised with (or others you learned as you grew up.) Then all of a sudden you notice you are having a harder time hearing others. Sounds around you are more muffled and difficult to understand. So you go to an audiologist and you are told that you have hearing loss. Not minor but significant enough to need a hearing aid. But what if you don’t want one? Most insurance for adults does not cover a hearing aid. They don’t consider a hearing aid a necessity. Hearing is a necessity but the equipment needed to hear when you lose your hearing is not? Where does that leave you?

The cost out of pocket for a hearing aid can range from $300 to over $1500 or more per ear depending on your needs and where you obtain them. If you are lucky you have benefits to cover the partial cost, but even then that could be hundreds of dollars or more. Most adults cannot afford that cost.

What about the ability to learn sign language to help? That’s a great thought but finding somewhere to learn it is the trick. Most hospitals offer interpreters for those who are already Deaf, but not classes to learn for those who are going or are Deaf. What about adults who prefer signing over hearing aids? What is available for them? Most colleges offer sign language, but the cost could be overwhelming and the classes hard to get into as younger students take the class for their chosen language.

I started noticing hearing loss around 2018-2019. I struggled with hearing someone talk to me in their normal tone from only 10 feet away in a quiet room. Then it progressed to struggling when someone had their back to me in a quiet room, to pinpointing the voice of someone talking to me in a crowded room. In public places crowds are inevitable. Even outdoors, the voices carry to a point where hearing people even next to me became a challenge. So I got my hearing tested initially in 2019 and there was some hearing loss, but not significant enough to warrant assistance. So I let it go. By 2021 it was noticeably worse. Something had to be done.

I did another hearing test and at that point I was told it was significant enough to need a hearing aid in one ear, but possibly in both. I was 44 years old. That was not something you want to hear at that age. I did not want a hearing aid. Yes it would help, yes I understood it was a necessity, especially in my line of work as a paraeducator working with students who are moderate to severely disabled. So I got one. The cost was a lot for a single parent to take but my insurance did NOT cover it. I, thankfully, got a discount thanks to union benefits but it was still well over $1,000.

So what was my next step? Preferably I would rather use sign language. I knew some thanks to the classes I took in college but that had been 20 years prior and the sign I knew from teaching my son sign as an infant wasn’t enough for communication so I was stuck using the hearing aid. It was small, discreet and blended in with my hair. But still, I had to wear one. But I noticed how much louder my job was with it on and turned on, so I stopped turning it on at work and just hoped for the best.

Then came students who were non-verbal that used AAC (augmentative and alternative communication) and who signed as well. I was finally able to put my signing to use again. Then I learned more and more. I realized how much I preferred it but not many people at work or even at home knew it. My daughter understood it, which helped in public for me to communicate, but she responded verbally due to her struggling to be able to sign.

Now to today, almost 6 years after I discovered my hearing loss. I wear a hearing aid in one ear, though I rarely turn it on but I wear it. I now work in a classroom with a teacher who understands my hearing loss and another staff member within my class has hearing loss as well. Where I am a 1:1 with a student who wears a Cochlear Implant and signs. So I can work on signing and learning more and more and I can communicate with my student verbally and in sign language. But that doesn’t help me outside of work. I’m expected to hear, which I’m still doing but the hearing loss is getting more and more noticeable. Enough that my bluetooth while talking on the phone is at full blast and it’s still a struggle. It’s enough that I use closed captioning when I Facetime on my phone or watch a tv show or movies on my computer. I am getting my hearing retested in a couple months (the soonest I could get an appointment.) I’m expecting more loss in my right ear as my left one currently has the most loss. Then will come the decision. Do I get another hearing aid or let it go? Do I want the expense of the hearing aid? Or do I find a resource for learning to sign and become more fluent than I currently am?

So I have some choices to make. Do I just decide to accept that I, as an adult with 2 kids (15 and 20) am losing my hearing and get another hearing aid OR do I accept what is happening but refuse to use another hearing aid and see how I can function without one? Not many people in my life, besides some people at my job, both staff and students plus my daughter (20) know how to sign. Others, namely my boyfriend, are trying to learn to make things easier on me. Then, finding somewhere that I can learn to become more fluent is the trick. There are online classes, but very few in person ones. Sure, I could learn easily online but I would much prefer somewhere closer to home to learn in person.

All I know is, I am an adult who is losing their hearing and struggling with how to cope. There are decisions I have to make and figuring out the right one for me is the trick.

#HardOfHearing #SignLanguage #adultswithautismandadhd

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Recognizing Stress Symptoms

I have severe depression and C-PTSD, and I have been going through extreme levels of stress, and I am only recognizing it now. Being a full-time caregiver for my mom’s cancer treatment was rough, and I made it through without the stress I feel today. Being a caregiver to someone post-chemo and in remission should be less stressful, but it isn’t. Post chemo, my mom is realizing that she is missing her memories of the ordeal.

The first month after chemo, she slept and didn’t want to eat anything or get out of bed. I brought her meals, but she kept forgetting to eat or didn’t want food. I had to monitor her blood sugar to keep it from dropping too low. There were many times I had to stand there and tell her to eat repeatedly. Chemo pain is strange because it lasts beyond treatment. Her pain was managed with Lyrica and a narcotic for breakthrough pain. During chemo, I kept track of her narcotic consumption but only limited her to the maximum dosage per day. Post-chemo, the doctor wanted to reduce the narcotics slowly, so I had to begin the process of restricting those pills. Towards the end of the first month, she began to ask me to bring her specific meals again. Her memory was foggy, and she stumbled, grasping for words. Her cognitive abilities were impaired due to chemotherapy, but I could see improvement from the last treatment. A big scare came one night when she fell out of bed while dreaming despite a bedrail to prevent falls. She must have hit her knee on something that left a bruise on the way down. An X-ray found nothing broken or dislocated, but it made walking painful, so I had to increase her narcotics until the pain passed. My focus on getting her out of bed each day had to wait a bit longer.

In month two, her struggle with words and names became less frequent, and her cognitive ability improved significantly. As her cognitive ability improved, she noticed her memory had gaps, which is normal and can be scary. Her knee recovered, but sleep came with a new symptom of restless legs due to the chemo-induced neuropathy, so she was often unable to sleep without narcotics, which I dispensed sparingly, reminding her the doctor wasn’t going to continue the prescription indefinitely. Broken sleep limited her energy levels and willingness to get up and move around. In talking with her doctors, the key to getting stronger is getting her moving and out of bed. Towards the end of the second month, I stopped checking in with her early in the morning for breakfast and waited until mid-morning to encourage her to get out of bed for breakfast. Towards the end of the month, she was getting up at least two days a week.

The third month was scary and stressful; my mom developed a severe cough, which became pneumonia. After two weeks of antibiotics, her chest had cleared. Surprisingly, the pneumonia and cough had her sleep into the afternoon before getting up, but she wasn’t stuck in bed. I developed flu-like symptoms after a series of vaccines that lasted for a week, and it was a struggle to keep up with mom’s needs, but I forced myself to take care of both of us. In the last week of month three, I encountered an allergic reaction that made my vision blurry to the point I was only able to make out vague shapes. My doctor prescribed eye drops that worked almost instantly but only lasted about four hours. The doctor didn’t want me dosing more than two times a day, so I had to plan my days and nights accordingly. Two weeks later, my eyes were normal again. And my annual visit to the eye doctor confirmed it.

Four months post-chemo, and my mom is doing much better. She continues to avoid walking and standing unless necessary. So, I have been encouraging her to do more, using my blindness as an excuse. My mom’s doctors are noticing her cognitive improvements and have encouraged her to exercise and gain strength again so she can take her driver's license exam to resume driving. I have waited months for an audiologist appointment, and it confirmed my hearing loss and need for hearing aids.

Through all of this, my best friend went into the hospital due to appendicitis, and he has waited months to schedule the surgery due to his foot infection. His foot infection didn’t respond to treatment, so he had his toes amputated, and he is living in a nursing home undergoing rehabilitation to learn how to walk with a prosthetic. So, both of us are going through crazy times with minimal support, and we are both struggling.

I have been waiting for a therapist who accepts my insurance and will take new patients for more than two years. I believe a therapist might have been able to help me manage my stress levels. I have been visiting open group therapy sessions, but with C-PTSD and extreme trust issues, my ability to participate is limited.

#PTSD #MajorDepressiveDisorder #Caregiving #Stress

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