Hearing loss or is it?

Symptoms & Treatments
21

I just googled the term question "is hearing loss a processing problem" and this link came up. I am going to contact one of these doctors, just wanted to share.www.ncapd.org

Unfortunately, I am investing in a TTY machine for periods of time when I am unable to hear. Last summer, before the dx, I went 2 months, where I could not hear and nothing was obstructing the canal. Luckily, when I received the dx, it was apparent, to the RA my hearing loss was tied with the Sjoren's. The sjoren's medication reduced inflammation and swelling of the glands directly outside my ear impacting my hearing. Upon inspection, the walls of the inner canal was swollen shut obstructing the ear drum. Within 3 days of taking the Sjoren's medication, inflammation went down and my ears made a popping sound and I could instantly hear... I have never been as grateful to hear my daughter's voice then that day, I cried.

22

I definitely have had more hearing loss in the last 2 years. I think it must be related to inflammation over time doing damage. Thankfully my husband has the same problem hearing so we just make a joke out of it ;-) My kids are probably glad I can't hear everything they say! It can be really frustrating though when other people just don't understand. I have been having a Lupus flare on and off (on right now) since 2009 and I swear I look my healthiest. It's almost like when our immune systems are in high gear we look healthy even though we are being attacked by that same immune system.

I do not work out of the home and therefore have no boss but I would hope with explanation and maybe even giving him some websites or something he will understand and make allowances for your particular issues. Hang in there :-)

23

Hi Kim, thankyou for this message. I dont like loads of different noise around me, it makes it so much harder to concentrate on what you are or were going to say. If i am at someones place, and they have the television on and several conversations going on with different people in the room, it really makes me feel i want to get out, its all too much for me. For a start i think why not turn the television off if you are going to talk. I have this deafness thing, i think its because i am forced to concentrate harder when alot of people are talking around me. I dont shout, i find that i am more likely just to go into myself as i cant cope with all the noise around me. It might be as i am getting older now that i dont like it, or perhaps i am used to peace and quiet seeing as i am on my own alot during the day. For yourself though, i am not sure what the answer is, but dont let people get to you, im sure you are very good at your job. Sometimes people just want something to moan about i think. And as for people understanding Lupus, thats a no-go. I havent experienced anyone who doesnt have Lupus, to be understanding about it. For a start they cant get how we look okay and are so ill, so i wouldnt be suprised if half the people i tell that i have Lupus, think i am making it all up. Its only people who spend long periods of time with me that realise that its not a made up disease and i do suffer from it, and i find those people are the most supportive. I am the same as far as getting mad, i am really placid and to make me mad, i have to be kept being wound and wound, but eventually the spring on me goes and i do snap, so to speak. But i can take an awful lot before that happens, i sometimes think maybe i am too placid and laid back, but i would rather be that way than go off at the deep end every time. I prefer to think about things before i get mad, i suggest you dont take any notice of this idiot, its his problem not yours. There is always one person who makes our life more difficult i find, and normally its their insecurities that make them behave like this. You know who you are deep down. Take care, look after yourself, love and hugs Astrid40xoxoxox

24

Hi Everyone,

As I move into 5 months of dx, hearing things about the dx is easier to handle. This morning, my daughter was asking me a question and I did not answer, then she stated "Mom, I know you can hear me, this is not your time to lose your hearing" I just looked quizzically she continued "Summer is the season when you lose your hearing, so can I borrow 20 dollars"

I just laughed for a good minute, I needed that hearty laugh and understanding from my teenager.

25

Hi Unshoreandscared, That was good of your daughter to make you laugh and be so understanding. We need that from those closest from us. My husband is usually really good but this morning he is like a bear with a sore head. What it is, is he is usually up before me and on the computer all nice and quiet and contemplating his day, and there i was having to iron something for going out, as normally i dont do heaps of ironing as i am too tired for that sort of thing. Anyway i didnt ask him to put the ironing board away, although he usually would do, but after all his whinging about its usually alot quieter in the mornings, he offered to put the iron and ironing board away so to preserve energy of course i said yes please. The reason why i am up so early is that i have a doctors appointment. I had MRSA in my ears a few years back and have had it recurr several times since then. I think i may have it now, so i am going to get another test. I picked it up in hospital, the hospitals in the Uk are rife with superbugs at the moment, and my hospital is one of the bottom three for the most superbugs. My hearing isnt good at the best of times, and i do get confused when alot of noise is happening. But my husbands hearing, Well!!!, he is going deaf for sure even if he wont admit it. Anyway i will pray for you that you get this sorted, and that your hearing problem does improve. I find sometimes if i am stressed that i am thinking of so many other things that i dont hear what someone is saying to me at the time. I am sure this isnt the case with yourself though, keep persevering to find out what is happening wont you? its all to easy for doctors to dismiss something especially if it doesnt seem that important to them or life threatening. I hate going to the doctors as i always have several things i have to ask about, and then i think he must think i have either been saving these things up, or made them up just for the visit. I have an infection of some sort at the moment, as i have been really unwell, the symptoms are the same as the time i had pneumonia before, trouble is, i dont know if you know this but if you are on steroids, the steroids mask infections so its hard to tell until the infection has really taken great hold, then it takes even longer to get better, but with my doctor i am quite lucky, as he will write me a prescription, and tell me not to use it until i feel i absolutely have to which makes sense. I dont want to be using antibiotics unless i have to, as i am allergic to all but one, and if we overuse them our bodies get used to them and dont work anymore. I am going to be so tired after my doctors visit today, i also have to pick some presents up from Boots the chemist that i have reserved online, well at least i dont have to look for what i want. Although i have one more present i need to get today, as i have a lady who comes round to support me regularly, i need a token gift for her. And when you dont feel well, its the last thing you want to be doing isnt it? Well done for being on the PTA, i couldnt do that, mind due i dont have children, so whose to say i might if i had got children. I became infertile after months of chemotherapy. I do have a little girl come to stay when i am well though, she has been coming here since she was three years old, she is nine now. Its a friend of our's daughter who is a male, who looks after her all alone, she has no mother, so he asked me if i would become her female role model which is a great honour to be asked, if she has anything female she wants to ask she comes to me. So i do have a sort of daughter. Anyway, i have deviated from the subject, i do hope you start to improve soon, take care, look after yourself, love and hugs Astrid40xoxox

26

lol!

27

Hi, just thought after doctors this morning, have got pneumonia like i thought i would have, been put on antibiotics and bed rest. Had chest xray to confirm this, and so now its more pills to add to the 24 other types i already have, great eh? i dont think. The worst thing about these antibiotics is, that they make the pain killers less effective, just what i need at this time of the year. Ah well, at least i dont have to do any major entertaining, just a few friends popping in to see us, so they already know i am not too good, so they wont be expecting me to be lively, although i will make the effort. Im pleased i have made you laugh Janice, i think having a sense of humour helps with having Lupus and its complications eh, anyway happy holidays, take care, bye for now, love and hugs Astrid40xoxo

janice said:

lol!

28

Astrid, so sorry to hear of your having pneumonia. I've had it twice in each of the past two years, so I finally got a vaccine for it this year at my general practitioner's office. Do you know if pneumonia is more likely in lupus patients? Because it seems as though I've had way more than my fair share of it over the years...when everyone is suffering a cold, I get pneumonia. Will offer a prayer when I light a candle for you tomorrow night at vespers. pax & hugs, pj

29

Hi Pjarden, thankyou for your message, i dont know if it is more prevalent in patients with Lupus, but i have had it quite alot myself over the last couple of years, i expect it doesnt help that our immunity levels are low. I have put something on the discussion forums about this and flu too. I had the pneumonia jab about 8 years ago now, the jab lasts ten years, it doesnt stop anyone from getting pneumonia, but it just means what we will get (if we have had the jab) is a lesser strain of it, the same with the flu jab, although i havent had my flu jab yet this time, as i had tonsilitis a couple of weeks back when i was booked in to have the flu jab. They have made another appointment for around three weeks time for me to have the Flu jab providing i am over the pneumonia of course. I think every sort of infection that any of us go down with takes longer for it to go away. Plus the antibiotics have a far worse effect on Lupus patients than they do on anyone who is healthy. The antibiotics i have to have, as i am allergic to all the others, make it so the pain killers are less effective, so i am in for more pain whilst i am taking these, so when i have them, i am always thinking "roll on when these are finished". If its not one thing its another eh? But if i want to get better i will have to put up with abit of extra pain for a while. Not easy though. I was going to go into town tomorrow and finish off the christmas shopping, dont think that will be happening now, so i will have to ask someone else to see what they can do to help. I can think of one lady that has offered before, so i might give her a ring later today to see if she can give me some help, fingers crossed. Anyway take care, look after yourself, bye for now, love and hugs Astrid40xoxox

30

Thanks, we love humor

astrid40 said:

Hi Unshoreandscared, That was good of your daughter to make you laugh and be so understanding. We need that from those closest from us. My husband is usually really good but this morning he is like a bear with a sore head. What it is, is he is usually up before me and on the computer all nice and quiet and contemplating his day, and there i was having to iron something for going out, as normally i dont do heaps of ironing as i am too tired for that sort of thing. Anyway i didnt ask him to put the ironing board away, although he usually would do, but after all his whinging about its usually alot quieter in the mornings, he offered to put the iron and ironing board away so to preserve energy of course i said yes please. The reason why i am up so early is that i have a doctors appointment. I had MRSA in my ears a few years back and have had it recurr several times since then. I think i may have it now, so i am going to get another test. I picked it up in hospital, the hospitals in the Uk are rife with superbugs at the moment, and my hospital is one of the bottom three for the most superbugs. My hearing isnt good at the best of times, and i do get confused when alot of noise is happening. But my husbands hearing, Well!!!, he is going deaf for sure even if he wont admit it. Anyway i will pray for you that you get this sorted, and that your hearing problem does improve. I find sometimes if i am stressed that i am thinking of so many other things that i dont hear what someone is saying to me at the time. I am sure this isnt the case with yourself though, keep persevering to find out what is happening wont you? its all to easy for doctors to dismiss something especially if it doesnt seem that important to them or life threatening. I hate going to the doctors as i always have several things i have to ask about, and then i think he must think i have either been saving these things up, or made them up just for the visit. I have an infection of some sort at the moment, as i have been really unwell, the symptoms are the same as the time i had pneumonia before, trouble is, i dont know if you know this but if you are on steroids, the steroids mask infections so its hard to tell until the infection has really taken great hold, then it takes even longer to get better, but with my doctor i am quite lucky, as he will write me a prescription, and tell me not to use it until i feel i absolutely have to which makes sense. I dont want to be using antibiotics unless i have to, as i am allergic to all but one, and if we overuse them our bodies get used to them and dont work anymore. I am going to be so tired after my doctors visit today, i also have to pick some presents up from Boots the chemist that i have reserved online, well at least i dont have to look for what i want. Although i have one more present i need to get today, as i have a lady who comes round to support me regularly, i need a token gift for her. And when you dont feel well, its the last thing you want to be doing isnt it? Well done for being on the PTA, i couldnt do that, mind due i dont have children, so whose to say i might if i had got children. I became infertile after months of chemotherapy. I do have a little girl come to stay when i am well though, she has been coming here since she was three years old, she is nine now. Its a friend of our's daughter who is a male, who looks after her all alone, she has no mother, so he asked me if i would become her female role model which is a great honour to be asked, if she has anything female she wants to ask she comes to me. So i do have a sort of daughter. Anyway, i have deviated from the subject, i do hope you start to improve soon, take care, look after yourself, love and hugs Astrid40xoxox

31

Hi there Unshoreandscared, They have a saying in medicine sometimes that laughter is one of the best medicines we can have, although not always possible if we feeling really unwell. I remember when i was stuck in hospital for three weeks a couple of years back with a bad Lupus flare and the complications of it, a friend of mine Clare came in nearly every day to see me and she would start doing silly things to make me laugh, which was really sweet of her. Another friend came in and pampered my feet, i was so lucky to have them come and visit, even though at times i just wanted to sleep. Its true what they say too, when they say, "you know who your real friends are, that when the chips are down and they are still around for you", and i have found this out when life has got tough, the ones who have stuck around are so special to me. Anyway bye for now, love and hugs Astrid40xoxo