Hi! I'm deaf.

[Gardenarian]

I'm putting this in Success Stories because I am starting to come to terms with my hearing loss. I lost most of my hearing last year due (probably) to Lyme disease.

A little story:
Dh and I are waiting at the airport for our flight, which has been delayed. He runs off to the restroom, and I'm waiting alone when someone from the airline makes an announcement. I hear "garble loading garble garble" and I get in line with our boarding passes, right near the front of the line, as I see DH returning. I hand my boarding pass to the attendant and he says "Blah blah (glaring at me) highlight blah blah (getting mad) end of line." It turns out we were supposed to go to a different line and have our carry ons measured and approved before getting in the boarding line. (Yeah, they could have done that when we were checking in. They could have put it in writing somewhere. But they chose to announce it 20 seconds before boarding, when everyone rushes at the gate.) My dh gets furious at the guy and calls him an a@@hole. The guy calls security....

Anyhow, we did make it on the flight, but not without a lot of hassle and anger.
As soon as he started making the announcement, I should have approached him (or someone) and said I was hearing impaired. I bet they would have let me board with no problems. But I chose to pretend that I could hear.

I do have some hearing and have been trying to struggle along, missing 3/4 of what is going on. No more. I'm still working as a librarian, and now I tell students "I'm deaf, you have to face me when you speak."

I was planning on retiring on my small pension, but found I can get nearly triple that amount that if I apply for disability. I hate the idea of being labeled "disabled" but my physical impairment keep me from performing my duties, so there it is. And it's not just the hearing loss, it's also severe tinnitus and vertigo (I am a mass of bruises and scrapes from frequent falls.) And dealing with epilepsy and interstitial cystitis as well.

I'm tired of faking. I'm deaf.

(No, hearing aids won't help. I do intend to try and take up another career, or find a library job that doesn't require working with the public. But that won't happen overnight. And I'm going to be more aggressive about healing myself, body and soul.)

[redfox]

Thank you for telling your story. Each of us approaches defining ourselves differently. I struggled to come to terms with the fact that I am mobility impaired. And that my capacity changes throughout the day, and throughout the week. I'm pretty gimpy and in pain the first hour or two after getting up. Later on, I pass as fully mobile, unless the pain shows on my face.

In a society that castigates us for appearing to be somehow "less than", I don't like to look vulnerable. I understand your being tired of trying to pass for hearing. You deserve the disability payments, by the way. Some day, I will probably make the same choice.

[Mrs. Hermit]

I am glad you are willing to come to terms with deafness, Gardenarian. I have meniere's syndrome, so I too face the risk of going deaf and have to deal with tinnitus and vertigo. Like you, hearing aids are not effective. What I have found is that the more open I am with people about my needs, the more affirmatively they respond. When I am clear about the "look at me when you speak because I can not hear clearly", I find I get good responses from people. Mentioning to the customer service that I am hearing impaired generally helps smooth things out too. You might want to contact the state office of disability for some information on what services are offered in your area for the hearing impaired. Support groups can be fun, sign language classes may be a possibility, and there are some other services that may be offered. My area is working to get text-in 911 calls, for example, because the deaf in our area are advocating for that service.

[dado potato]

I can hear, but I live in the land of Lyme's Disease, so ... there but for fortune go I.

It appears that you are learning and deciding how to go on with life after your hearing loss. I join with others here who wish you success. I have not been in your situation, but I can imagine that there must be online support groups composed of people who are coping with similar challenges.

[SteveinMN]

What I have found is that the more open I am with people about my needs, the more affirmatively they respond. When I am clear about the "look at me when you speak because I can not hear clearly", I find I get good responses from people. Mentioning to the customer service that I am hearing impaired generally helps smooth things out too.
Thank you for doing that, Mrs. Hermit! I think people are willing to make all kinds of accommodations if others are straight with them. But no one likes to guess or read minds.

[Spartana]

Sorry to hear (he he) about your hearing loss. I have been ,legally deaf since an injury I incurred while in the armed forces at age 28 so I know what a huge life changing thing it is. I also had to give up my job, as well as give up the "future" civilian job I had trained for and got my BS degree in and re-train for another profession. While that was tough it was even harder on my social life and family/dh life. I've grow to accept it all and just figure if it bothers people that I can't hear or u understand them (after I have told them) then it's their problem and not mine. Wishing you the best! And don't give up on hearing aid either - or other technologies. Lots of improvements every year and something may eventually work for you. Until then enjoy the peacefulness of silence like I do. And use closed captions :-)

[Gardenarian]

Thanks you guys for your replies. Re-reading this I feel like I sound defensive and angry (which I kind of am - angry at the whole situation, and myself, for not handling things better.) I've been trying to keep a stiff upper lip and a smile on my face for so long that I kind of imploded. :devil:

These "invisible disabilities" are so problematic. Yes, I have been expecting people to read my mind!

Mrs. Hermit: One possible diagnosis the docs are looking at is Meniere's, but I have more loss of balance than the spinning, nauseating sort of dizziness - though the ground comes up and slaps me in the face a couple times a month.

dado potato: when this all fell out I had no idea that there was a lot of controversy around Lyme disease. My HMO won't do the "good" Lyme tests - mine showed that I had Lyme at some time, but my doctors aren't treating it. I haven't pursued it because the treatment appears to be massive, long-term doses of antibiotics - scary! I do have a lot of joint pain, and interstitial cystitis is a common complication of Lyme, so I'm pretty sure it's the culprit. I would like to get this monster out of my system but don't know what course to follow. :confused:

The good news is, I finally got my work hours reduced (though I'm still scheduled for the busiest shifts.) well, it's a start.

[try2bfrugal]

Thanks you guys for your replies. Re-reading this I feel like I sound defensive and angry (which I kind of am - angry at the whole situation, and myself, for not handling things better.) I've been trying to keep a stiff upper lip and a smile on my face for so long that I kind of imploded. :devil:

These "invisible disabilities" are so problematic. Yes, I have been expecting people to read my mind!

Mrs. Hermit: One possible diagnosis the docs are looking at is Meniere's, but I have more loss of balance than the spinning, nauseating sort of dizziness - though the ground comes up and slaps me in the face a couple times a month.

dado potato: when this all fell out I had no idea that there was a lot of controversy around Lyme disease. My HMO won't do the "good" Lyme tests - mine showed that I had Lyme at some time, but my doctors aren't treating it. I haven't pursued it because the treatment appears to be massive, long-term doses of antibiotics - scary! I do have a lot of joint pain, and interstitial cystitis is a common complication of Lyme, so I'm pretty sure it's the culprit. I would like to get this monster out of my system but don't know what course to follow. :confused:

The good news is, I finally got my work hours reduced (though I'm still scheduled for the busiest shifts.) well, it's a start.

I don't know if my experience would help or applies to you at all, but I had terrible vertigo and dizziness awhile back and over time figured out how to get rid of it.

Mine went away with more alkaline fruits and veggies, extra magnesium and stretches to loosen the muscles around my neck and ears. I had to stay off the computer for awhile because that was tightening up my upper body muscles. I also corrected an iron deficiency, so I think that played a role, too.

Magnesium can also help in some cases of hearing loss -

http://www.ncbi.nlm.nih.gov/pubmed/8135325

Most people in the U.S. do not get enough magnesium in their diets, so it might be worth checking into.

[reader99]

My cousin's wife had Meniere's. After decades of difficulty and limitation she had a cutting edge surgery [so to speak] that as I understand it took out or disconnected the part of one inner ear that was malfunctioning. After the surgery she had to stay in bed several days while her other ear (or part or whatever it is - I'm not explaining this well) learned to do the whole job on its own and since then has been symptom free.

[Tussiemussies]

Hi Gardarian,

So sorry that you have mainly lost you hearing. I would imagine that there is grief around that and then coming out into the open about it is a really good point to be at. You sound as though you are going through the grieving 5 step process which I forget what it is but acknowledgement and anger are part of it until you get to full acceptance.

I wish all the very best on your journey. I also have disabilities that are not largely accepted by society so I don't tell anyone about it and I on on quite a lot of meds that are helping me. Hope that you will find something for you.

Are you taking cranberry capsules for the UTI, also not eating sugar should help and boosting your immune system. When you have to urinate, don't hold it in. Also certain sex positions will exacerbate it. Your Dr. should have already advised you. I have a tendency to get them. But it is not chronic. You might want to get on the antibiotics for that since it could spread to your bladder and kidneys.

Thinking of you.

Christine

[fidgiegirl]

I enjoyed reading your story, Gardenarian. My school district has several special education programs and they work so so so so hard on self-advocacy. You have had to figure that out on your own being an adult when your disability came into play. I hope things improve as you continue to feel your way through this. I know we have talked about technologies on threads in the past but there really are some uses of mainstream technologies that could help with ease of everyday life. Tons of hard of hearing people use smart phones for lots of uses - texting being the most immediate that comes to mind. Let me know in a PM if you ever want me to scare up specific ideas from any of our deaf/hard of hearing services teachers. They are a wealth of knowledge and our department is uniquely large (our district maintains the staff and then contracts their time out to other districts).

[libby]

I have a profound hearing loss too. I can relate to how frustrating it can be. We also just took n airplane flight and I could not understand any of the announcements at the airport. On a lighter laugh out loud moment when we got to the island my husband asked me where we could find a bunch of totem poles. I looked at him blankly and asked why he wanted a bunch of toilet bowls.....gotta laugh at yourself that is for sure!!

[Gardenarian]

Fidgiegirl - I finally got a smartphone! I decided to go with Republic Wireless. I've only had it a few week and am still figuring out the best uses for it. Texting is great - I'm trying to figure out a simple way that people can text me from their computers (the text function is so much easier than email.)

Libby - travel is a challenge for sure! I have generally traveled by myself in the past, but I don't think I'm up to that yet - having someone with good ears along helps so much.

I am interested in how I can use supplements to improve my health. I have read that topical magnesium oil is better than tablets (which I do take.) And, I use Epsom Salts to soak my feet and in the occasional bath. I have also read that getting into the ocean provides your body with all sorts of great minerals, so I've been going to the beach a lot!

[Mrs. Hermit]

I love texting!! Haven't yet advanced (?) to a smartphone, but I can communicate with my kids so much better with texting and instant messaging. The smart phone may help you travel. Some airlines have experimented with their announcements on text messages for hearing impaired passengers. I usually take a travel companion with me (hubby works nicely for this!) so haven't yet faced traveling alone.

[peg1964]

I have a 40 yr old deaf son and travel is usually a pain but he now he just writes a note saying he is deaf, where he is going, & who he is traveling with (usually deaf wife and hearing child) and they use sign language to communicate....no problem after that.....
I am deaf in one ear and I have a really hard time in a crowd....I can't tell where sounds are coming from, who is saying what etc. etc...I was at a dinner last year and unfortuately everyone was sitting to my left, my deaf ear....I heard NOTHING of the conversations....I smiled and nodded alot that nite LOL..
Texting is great for the deaf.....sometimes my son will call me thru an interpreter (I HATE video phones)....last week, the interpreter missed one word so the conversation wasn't making any sense.....I finally figured out what my son was saying....sometimes it's like working a puzzle......

[fidgiegirl]

Glad to hear it, Gardenarian! I hope there will be lots of possibilities with it to make everyday life easier.

[try2bfrugal]

I am interested in how I can use supplements to improve my health. I have read that topical magnesium oil is better than tablets (which I do take.) And, I use Epsom Salts to soak my feet and in the occasional bath. I have also read that getting into the ocean provides your body with all sorts of great minerals, so I've been going to the beach a lot!

Gardenia, I read over your first post again and I think I have had 2/3 of the items on the list.

If you do a search on Pubmed, the US online medical database, there are many links to epilepsy / seizures and low magnesium levels or magnesium used as a treatment for the disorders.

I didn't have hearing loss but I had super-sensitive hearing which is also linked to magnesium deficiency.

I had trouble with bladder infections for years. I was put on antibiotics which helped in the short term, but in the long term the antibiotics destroyed the good bacteria in my GI tract, which made it easier to get another bladder infection. Some antibiotics may also cause magnesium deficiencies. For me this led to a never ending cascade of symptoms, half linked to some sort of infections and the other half to magnesium deficiencies.

I don't know what will work for you but what helped me was buying pH paper to make sure my urine pH was in a normal range (you can get this on Amazon), eating yogurt with live cultures for good bacteria, and eating a more paleo type diet with lots of foods high in magnesium. I don't do well with magnesium supplements taken every day, I think because they are what many antacids are made of so they seem to impact my digestion negatively after awhile.

I have noticed that I never get bladder infections any more unless my pH is out of normal range, one extreme or the other. When I first bought the pH paper my urine was really alkaline all the time, until I started the yogurt.

[Spartana]

I have a 40 yr old deaf son and travel is usually a pain but he now he just writes a note saying he is deaf, where he is going, & who he is traveling with (usually deaf wife and hearing child) and they use sign language to communicate....no problem after that.....
I am deaf in one ear and I have a really hard time in a crowd....I can't tell where sounds are coming from, who is saying what etc. etc...I was at a dinnehr last year and unfortuately everyone was sitting to my left, my deaf ear....I heard NOTHING of the conversations....I smiled and nodded alot that nite LOL..
Texting is great for the deaf.....sometimes my son will call me thru an interpreter (I HATE video phones)....last week, the interpreter missed one word so the conversation wasn't making any sense.....I finally figured out what my son was saying....sometimes it's like working a puzzle......
I travel alone most of the time (she says from a motel room in the pacific NW - where the sound is off on my TV but the closed caption is on - much to the relief of my fellow motellers :-) :-) ). I always bring a pad of paper and pen with me so people can write down a brief note of what they are saying. Most people will just speak louder but will write a note if I still can't understand them. If I have to do something important, like get medical info from a doc, I will have them e-mail me or bring someone to translate for me - i.e. repete the info to me very loudly as I have found most people you don't know are hesidant to speak very loudly to you for longer then a couple of sentences. I am fortunate that I can use hearing aids and they help a lot, but still need other devices (special phones for hearing impaired), using closed captions, very ,oud speakers, etc...even with those. Those phones and other aides like try machines can often be provided by your state free of charge.

[Tradd]

I have a funny story related to me by a friend from church with hearing issues. She wears two hearing aids, but still likes to sing. I face the congregation from where the choir is. My friend reads my lips to help keep her on track where we are in the service. But the funny part is the day she told me this, my voice went haywire partway through the service, so I was essentially "lip synching" for appearances sake.

My friend and I had a good laugh when I told her she was lip reading my lip synching. :D

[Tussiemussies]

Hi Gardarian,

Just saw this article about 10 natural antibiotics a person can use and I thought of you, they don't get to that part until your almost at the end. Hope you are having a better day today. Chris


http://frugallysustainable.com/2013/08/food-and-herb-cures-10-natural-antibiotic-alternatives/

[frugalone]

Well, I would be angry, too. Your post brought tears to my eyes. Working in a library, I can just imagine how hard it would be if I could not hear. The only jobs I can think of where it wouldn't be necessary might be in technical services.

Sending hugs and good wishes to you.

[Spartana]

Well, I would be angry, too. Your post brought tears to my eyes. Working in a library, I can just imagine how hard it would be if I could not hear. The only jobs I can think of where it wouldn't be necessary might be in technical services.

Sending hugs and good wishes to you.I once wrote a list of jobs that didn't require you to listen too much. It was when I was making the transition from a law enforcement career (had gotten a Bach. in criminal justice and worked in that field in the service partly) and needed to find something new. I went back to school for a science degree and ended up an environmental compliance officer so was able to combine both fields. Maybe Gardenerian can transition into something at the library ( research librarian,, etc...) that allows her to stay in her field but not have to work directly with the public or have to re-train for a new career. I imagine there are lots of jobs like that at libraries.

As for dealing with tinnitus - no so,ution there. I have it and it can drive you mad. I've learned to deal with it but still drives me nuts all these years after. And I still press my ears to the walls every time I come home because I swear there is a huge hives of bees living in my walls. Every tine - geesh :-) :-)

[larknm]

Gardarian, I had urinary tract infections often until a doctor recommended U-Tract, which can be got from Amazon, and it helps amazingly. My dog uses it too when she has UTI. Another point, my husband is a medical library, doing research for doctors and nurses and interlibrary loans with other medical librarians. He could easily do all this in writing--most of it is anyway, people write down what they want him to find for them and he emails it to them or if it's a book, lets them know when it's in. Interlibrary loans with other medical librarians is the same way. Finally, in revealing invisible disabilities, which I've had all my life--when I've told people sometimes it's great and sometimes competitive or prejudiced people look down on me for it--so if the latter happens, it's good not to be blown away by their reactions, but to rely on your support people.

[ApatheticNoMore]

My HMO won't do the "good" Lyme tests - mine showed that I had Lyme at some time, but my doctors aren't treating it.

Well I'm assuming the tests themselves aren't massively invasive: get tested. Either fight the HMO (they need to be fought with to get treatment), or else pay out of pocket to get tested if that's a possibility.


I haven't pursued it because the treatment appears to be massive, long-term doses of antibiotics - scary! I do have a lot of joint pain, and interstitial cystitis is a common complication of Lyme, so I'm pretty sure it's the culprit. I would like to get this monster out of my system but don't know what course to follow.


antibiotics can have bad complications (c-diff for instance), but isn't lyme disease a pretty serious disease as well? It can lead to neurological complications, brain damage, psychiatric problems etc. (I'm not saying you have these btw - I don't know you that well :laff: - I'm just saying lyme disease is a serious disease). I can't imagine not treating a *serious* bacterial infection like lyme. UTIs whatever, usually not serious, but incredibly annoying, but IC is not just a UTI of course.

[Gardenarian]

Just to clarify, interstitial cystitis is not related to UTIs - I have ulcers in my bladder. The cause of this is unknown and there is no effective treatment (and it is a very painful condition.) I have tried all the known treatments, including surgery, without success. I've had it many years and have learned to live with it (more or less.) Antibiotics aggravate interstitial cystitis.

I've been going back and forth on the chronic Lyme thing - there are "Lyme literate doctors" who will test you, but it seems that everyone who goes to them gets a diagnosis of Lyme disease. It's not clear that the antibiotics are actually helpful - there is anecdotal evidence only. Treating the Lyme would not give me back my hearing, but could prevent future problems.

Yeah, I think I should probably have further tests just so I know - there are alternative treatments.
I hate dealing with medical stuff and I am scheduled to have foot surgery in December (it just keeps coming at me) so I am kind of focused on that right now.

I also wanted to add that when I got all the paperwork for filing for retirement and disability I just couldn't do it. I'm working with my boss to come up with a schedule that puts me on at the least busy times.
I'm not sure what I'm doing - if I'm not ready to give up my identity as a librarian, if I just hate the idea of being disabled, or what. For now, I'm down to 16 hours per week. I've put my cabin on AirBnB and already have over $2000 in bookings (in less than a week!) Financially, at least, things are okay, and the reduction of my hours has been an enormous relief. I'm just working through this whole thing; at least I am no longer in denial. (That "Little engine that could" story seems to have had way too much influence on my life.)

Just identifying myself as hearing impaired has made a big difference in my life.

[fidgiegirl]

Thanks for sharing an update. I am really happy for you that you are going to be able to work fewer hours, and WOW on the AirBNB! Awesome!!

[Tussiemussies]

Hi Gardarian,

Thank you for letting us know how you are. So glad to hear that the cabin is ready to go and you are renting it already.

Sounds like going less hours at work is taking some of the stress away. Maybe it will help you feel better so that you will be able to make the right choices for you medical wise....

Best wishes...christine

[Kestra]

Just to clarify, interstitial cystitis is not related to UTIs - I have ulcers in my bladder. The cause of this is unknown and there is no effective treatment (and it is a very painful condition.) I have tried all the known treatments, including surgery, without success. I've had it many years and have learned to live with it (more or less.) Antibiotics aggravate interstitial cystitis.


You've probably tried this if you've done everything, but just in case, have you tried Glucosamine/Chondroiton/MSM? I know we sometimes use it in cats for interstitial cystitis and a quick Google search indicated some people do as well.