I’m driving myself crazy and I’m sure I’m driving Stuart crazy.
During the day I talk to KIki (our dog) a lot. I think she likes, but how would I know? Lately I’ve been trying to figure out why I talk so much and how I can stop. I’m trying hard to notice and stay silent, but I tell Stuart everything that’s going on even if it’s not the slightest bit important. For example, just now I showed him a pdf that was a page that listed everything that is recyclable here, and told him I printed it and taped it by the bin. That was good, he’s been looking for that, I should have just stopped there. Then I started pointing out that the page had a blue background because our recycling bins are blue and it says to “Use the Blue”, I went on to say, however, the one I printed out is not blue because our printer only prints in black and white. All of this transpired while he was trying to read. How he gets any reading done I have no idea.
That is just a tiny example.
If I’m not talking I’m often slightly moving my lips because I’m actually talking in my head, but unlike most people I feel the need to say it out loud. A couple of months ago this actually got worse because of the mania, and I really noticed it then. I talked more and very, very fast. Now I’m back to my normal speech, but I’m really noticing how much I TALK! When did this start? I haven’t always been like this. What on earth prompted it?
Well I have a few theories.
When I first started losing my hearing I realized that I would often talk over people, I realized then it was for two reasons. One I couldn’t hear everything they said so I often didn’t realized they were still talking. (I wasn’t very good at reading lips, or even noticing that they were still moving….duh). I made a conscious effort to get better at that and I think I have. When I’m with others, like going to breakfast every Sunday with Stuart’s father, I don’t talk over anyone. I try very hard to understand what is being said and add to the conversation when appropriate. (hand patting back, I got that at least).
Another theory is, when I first got sick and for a long time after that, Stuart worked from home. Even at his last job he worked from home a lot. Here, he is gone all day, I’m alone and basically have no contact with people; especially when I’m having a flare and can’t drive or get out at all. I’m often texting, but that’s different. (I probably do that too much too) So when Stuart gets home he is bombarded with everything I’ve been thinking all day and everything that is happening since he’s been home. I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even with that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?
I used to get so mad at him because he didn’t hear what I said. He would be watching a show or reading and just not hear, after all, he didn’t know if it was important or not. How could he, I talked all the dang time. Recently we made a pact that if we need the other to pay attention, we would let them know and ask them to stop what they are doing and pay attention., but other than that, I could just ramble, if he hears it, that’s okay, if not, no worries. I really want to stop talking so much.
In Buddhist teaching we find that talking all the time or for too long is a form of selfishness, while being easy to talk to shows respect, generosity, and courtesy toward others. Buddha saw being easy to talk to as an expression of love (Sn.143*). Listening is a virtue, not talking all the time.
So how to I stop this constant chatter? First I think I should meditate more, I’ve lost that practice along the way, not that I ever did it much. Practicing to sit still in silence has to be good for this person who can’t be silent. I know I won’t be able to silence the chattering monkey mind for a very long time, but if I can just keep my mouth shut for a while, that would be a big step forward. Perhaps I can remember the Buddha’s teaching each time I start to ramble. I shall also try hard to listen more, how can I be listening if I can’t stop talking. Of course there aren’t many people around for me to listen to, and often when I try I can’t understand what they say anyway…..part of the problem huh? I have noticed when I’ve been in silence for hours and I suddenly see someone, like when Stuart gets home from work, I can’t understand much at all. His voice sounds all garbled and tinny. That’s just weird to me. I normally have the TV on all day trying to hear something so I’m not hit by that, but even when that noise going I still get bombarded by this garbled speech when I first see someone. Is that one reason I talk? So I won’t hear that?
If all else fails, I can always tape my mouth shut…that will teach me!
**Everyone should read the comment by Kara, it is a wonderful contribution to this post. Don’t wait, go there now!
*Sutta Nipāta, ed. D. Andersen, H. Smith, PTS London 1913
Did you know that approximately 48 million people in the United States have a hearing loss? The goal of the Walk4Hearing is to increase awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss.
This is my first year participating in the Walk4Hearing and I’m excited and nervous. I’m excited to be surrounded by people who live with hearing loss, like me; our friends and family who support us, audiologists, and advocates…everyone coming together to make a difference. I’m nervous because ….well golly, this is one place I’m not nervous because I can’t hear. That’s pretty amazing. I will be using my walker for balance and safety. I am a little nervous that I might have a vertigo attack, but hubby will be with me, I’ll take all the precautions I can, and if it happens, I’ll deal with it.
I’m pushing myself by participating in this walk, it’s important to me. It’s hard for those with normal hearing to fully comprehend the challenges that one faces with hearing loss. It’s hard to imagine the disorientation that comes from the absence of sound, the concentration required to communicate using both visual and auditory clues, and how people and things can come up from behind you with no warning.
This year, the Walk4Hearing will include a #HearingLossChallenge. Walkers will have the opportunity to wear earplugs during the walk to experience what hearing loss is like first hand. The earplugs will be provided free at the walk sites. Even though, the experience isn’t completely accurate, it will give the wearer a taste of what it’s like to live with hearing loss. Photos and reactions can be shared on social media using the hashtags #HearingLossChallenge and #Walk4Hearing.
I am hoping you can support me in my efforts to raising awareness about hearing loss. Your tax-deductible gift will make a difference in the lives of many!
You can make an online donation from my personal page (click the personal page link here). Any amount, great or small, helps in the fight to make hearing loss an issue of national concern. I greatly appreciate your support and will keep you posted on my progress.
(please visit Sheri Eberts blog Living with Hearing Lossto read about her experience with the Walk4Hearing. I have shamefully used many of her words above, with much gratitude.)
The Hearing Loss Association of America® (HLAA), founded in 1979, opens the world of communication to people with hearing loss through information, education, support and advocacy. In addition to the Walk4Hearing, HLAA publishes the bimonthly Hearing Loss Magazine, holds annual conventions, hosts online learning with the Hearing Loss Support Specialist Training, and more. HLAA has chapters nationwide to support people with hearing loss. The national headquarters is located at 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814. Phone: 301.657.2248.
I must say, I really missed going to the movies. It had been years since I graced the dark room, sat in the good seats, and enjoyed a movie in the theater. For too long have I waited until a good movie came to video. I often just missed them all together.
I know now that all theaters are required to have closed captioning for all digital movies*. I admit it was intimidating for me. I asked at one theater a long time ago and they had no idea what I was talking about, even though they had a sign in their window that showed they have have equipment for the hard of hearing.
Stuart and I decided to take a chance and go to the theater close to us. It said on line that they have the equipment and they have it available for almost every movie. We decided to go to a movie that had been out for a while, during a matinee. It was the right choice, we were the only ones in the theater, a great way for me to find out just how to use the closed captioning device.
The device looks like a box connected to a flexible arm with this round object on the other end. The round object fits perfectly in your cup holder, you use the flexible arm to position the box where you want it. I put it so that the captions would be at the bottom of the screen, like it is at home. It took me a while to figure out exactly how I wanted the box. I was grateful that some of the trailers were captioned so I could get it right before the movie started. We sat in seats in the center, kind of up front. Not the seats closest to the screen, the first row after you go up the stairs. I found this to be too close to put the captions in the right place. We needed to move back a couple of rows, it worked perfectly there.
We saw the Batman Lego movie, and it was a hoot. It was great to see all that action and the cute little quips that they made about Batman through the ages.
I will be seeing more movies in the future. If you need closed captioning to see a movie, I suggest you give it a try. The first time you use it I suggest going to a movie that has been out a while so the theater won’t be full. Then you can move around to find the perfect seat for you to see everything and see the caption box too.
I admit it was a little different because the captions are close to you and the movie is far away. It took a minute or two for me to get used to this.
Some theaters offer glasses you can use and they transmit the text right before your eyes. I don’t think these would work with me since I already wear glasses. I heard that the glasses can get heavy. Here’s a link to read all about the glasses.
Other movie theaters have a hearing loop. “A hearing loop is a wire that circles a room and is connected to a sound system. The loop transmits the sound electromagnetically. The electromagnetic signal is then picked up by the telecoil in the hearing aid or cochlear implant.” Hearing Loss Association of America
My cochlear implants do have telecoil (T-coil), but I haven’t seen a theater around here that offers this option. I hope to try this option in the future.
Let’s all go to the movies!
*according to a ruling on November 21, 2016, theaters are required to accommodate persons with disabilities, including closed captioning for all Digital movies. You can read more about this on the ADA site.
Throwback Thursday! Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.
The post I want to share with you again came from another Health Activist Writers Challenge on April 11, 2012. The prompt was “Theme Song”, I was to imagine my health focus or blog is getting its own theme song. At the writing of this post I was losing my hearing, but I hadn’t lost it completely yet. I did not have a cochlear implant yet.
I wanted to repost this because often people have no idea what it means to have tinnitus. Please note that my tinnitus will not sound like anyone else’s tinnitus, everyone is different. Even my tinnitus is different on different days. It sounds much different now than it did at the time of this recording. I want people to know that just because I’m deaf it doesn’t mean I just hear silence when I take off my cochlear implants. Here is that post, I hope you enjoy it:
I happen to be losing my hearing due to Meniere’s Disease. So music is very hard for me. I can’t really hear it even with my hearing aid, it sounds very tinny. However, I have tinnitus all the time, so I hear noise all the time. At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day. Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out. That was the day, I read this prompt. I thought, I couldn’t have a song. Then I thought, even when I’m deaf, due to the tinnitus, I will hear sounds all the time. NO, they won’t be sounds I want to hear, but I will hear sounds.
I talked with a friend of mine, Vincent Morrison, who is a sound engineer. He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT. It varies constantly. But these sounds always seem to be around. We did put in some of the startling sounds that just come out of no where that scare me. We didn’t make it as loud as it can be. (I did want people to be able to listen to it.) I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?
So on a better hearing day, my dear friend came over and he tried his best. I must admit I’m not the best person at describing sounds. I am so touched to have this recording. Trying so long and so hard to explain just a little of what I hear has been so hard, now…this is my song.
“My Songs of Silence” – sound recording by Vincent Morrison
I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.
I envy people who look sick. It’s just hard to be as sick as I am and look completely normal most of the time. Others have no idea what I go through. I know on the outside I appear normal. I know it’s hard for people to understand why I can’t do things. Sometimes it’s hard for me to understand. Sometimes I feel if I looked sick it would be easier.
I’ve played the sick card. This is very hard for me to admit. There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick. Normally that is something that would make me sicker. Something I might want to do, but I know if I do it I’m going to pay the price afterward. So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place. Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough. I can think of one. There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card. Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.
When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him. Yes when I get mad I act like a child. “I can’t hear you, lalalala”. I’m sure it infuriates him. I’m acting like a child. And at the time, I don’t care.
I’m addicted to the internet and I don’t feel that is a problem. I am basically housebound. I can’t leave without someone else. I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands. I don’t have friends close by since we moved. Even before we moved I had very few that I saw on a regular basis. I keep in touch with my friends through the internet. I read, I write, I research, I email, even my TV is through the internet. Some people may think I spend way too much time on the internet, I don’t think so.
I really don’t miss working. If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job. I dreaded going to work. I don’t miss it at all. I don’t like the fact that I can’t work. But missing my job? No not at all.
I care what people think. I keep being told, “who cares what people think?” Well I do. Why? I have no idea. I don’t like this part about me, but I really care about what people think. I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac…. Yet I don’t like to go out looking bad. I don’t want people to think I can’t take care of myself. I don’t want people to think my husband isn’t taking care of me. I care what people think when they come in my house. (as if so many people come in my house) I care what people think when they ask me what I do and I can’t give them an answer. I don’t “do” anything. I even dress up a bit just to go to the doctor. Especially my therapist. She is a lovely woman, so put together, and I want to look all put together too. So I actually dress up a bit to go to my therapy sessions. How weird is that?
I often don’t know how to talk about anything other than health issues. My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking. But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.
Often I have no idea what someone just said to me, so I fake it. When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad. It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway. Often when I’m with Stuart I just stand there and smile and let him deal with the conversation. It’s hard on me, not being able to participate, but it’s harder to struggle through it.
I love my recliner. I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do. I love this chair. I got it when I got my hip replaced, I don’t know what I did without it! I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier. It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.
I don’t shower of bathe regularly. Taking a shower or bath is an ordeal. I have a safety issue with both. Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem. Taking a bath is easier, but it’s much harder to get in and out of the tub. I’ve also had vertigo start with me in the tub a few times. I have to have someone with me when I shower or bathe. It takes a lot of energy out of me. I often have to lie down and rest afterward. I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks. No, I’m not gross, I do wash up. But taking a full on bath, takes a lot.
Sometimes I’ll wear the same “clothes” for days. When I don’t feel good I wear the same clothes for days. By clothes I mean a tee and shorts or sleep pants. I will move from the bed to my recliner and back. Who needs to change clothes? Truthfully, I don’t think I could if I wanted to. But sometimes I don’t change clothes simply because it’s easier.
I’m hard to live with. I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.
Are there confessions you have? Want to share? Do you share some of mine? I’d love to hear!
(photo by and of W. Holcombe. All rights reserved)
I got my first cochlear implant (CI) in July of 2011, and my second in September of 2013. When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs). A friend of mine asked me a few questions about it recently. I’m here today to answer some of those questions.
What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing. Let me see if I can explain this in my own words. There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter. There is part that is on the inside that is the stimulator and the electrode array. Sound comes into the microphone and goes through the speech processor to the transmitter (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator). The stimulator is in my head, between the skin and the skull. When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves. For a better explanation please go here. (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)
Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease. My hearing loss happened fairly quickly. I was diagnosed bilateral in November of 2009. In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear. That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked. It took a little while, but I soon got my second CI.(September 2013) Why did I get cochlear implants? because that was the only way I would be able to “hear” anything.
How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site. “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.”
Do you hear the same with a cochlear implant as a you do with normal hearing? – No. Some people can understand words and sounds immediately, other people can only hear clicks and whistles. It is a completely different way of hearing and your brain has to be retrained. When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium. A lot of Donald Duck and Mickey Mouse voices were around. Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part. When I hear something I’ve never heard before things can sound very odd. Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them. The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.
Do you now hear like everyone else? or is it odd? What is your hearing like now? – This is the big question isn’t it? What is my hearing like now? First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.
I often can’t hear when someone speaks behind me. If there is noise in the room I have a very hard time hearing. (the newer CI’s are better for this, even though I have a newer CI I still have a hard time) In groups it is very hard to keep up with what everyone is saying. I am much better at conversing one on one. I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me. Between the two of those I do pretty well, but put me in a crowded room, and I’m lost. Heck, put me in a room with more than one person and I can get pretty lost.
I think I might be able to hear better if I had more practice, I’m not sure. Most of the time I only talk with Stuart. I talk to my doctors. I talk with our roommate, but I have a very hard time understanding him. His voice is deep and I simply cannot understand most of what he says. It makes things difficult, and sad. But for the most part I don’t see anyone else. Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity. However, it’s also really hard to put myself out there in those situations because I get so lost and confused. It does make meeting new people even more challenging.
Unlike most people with cochlear implants my hearing fluctuates. Some people with Meniere’s who get CI’s end up still having fluctuating hearing. Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted. My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.
Let me tell you what an average day for me is like. I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound. Everything sounds a bit loud. Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change. It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud. I’m always telling Stuart to please be quieter. Sometimes my hearing will change throughout the day. I will often say, “I’m having a bad hearing day.” I’m thrilled when I can say I’m having a good hearing day.
When I take my CI’s off the world changes. Suddenly the only thing I can hear is my tinnitus. (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)
I don’t know sign language. I am working on learning some, but I haven’t been able to take a class. At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.
What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off because I got too close to something metal. I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it. It’s kind of funny, kind of annoying. Other times when I want to lie down the headpiece won’t stay on. This is annoying, especially when I’m sick. I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.
Does it hurt? – Well the surgery hurt, but it wasn’t so bad. It is actually an out-patient surgery. Does it hurt on a day-to-day basis? Not really. If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that. I have screws that are very close to the surface right behind my ears. One ear is worse than the other. Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin. Sometimes this hurts. Sometimes my processor and glasses will rub on them. My sun glass arms are thicker than my daily glasses and they will cause that area to hurt. If I can lie down on it, it hurts a bit. Other than that, no it doesn’t hurt. If I didn’t have the screw issue I really wouldn’t even notice I have them on.
Now I just have to share the funniest thing I’ve misheard due to my hearing loss– Once I asked Stuart what Jesus was other than seen as a prophet and son of God. The answer I heard was, “Jesus was Jimmy Buffett” I busted out laughing. “Whaaat? Jesus was Jimmy Buffett??” What Stuart actually said was, “Jesus was a Jewish Carpenter.” I still get the giggles when I think about Jesus being Jimmy Buffett!
A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital. My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.
I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home. You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to. They said no problem, and I sure was glad. I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds. I also had an attack right before my appointment on Friday. I had very little balance when I saw the doctor and my vision still wasn’t clear. So he saw me when I was not doing well. I think that’s a good thing. How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there? That is so frustrating.
When we walked into the Outpatient Clinic it was like walking into an airport. You checked into the front desk, we both got arm bands to prove we belonged there. There were all kinds of signs and lines and directions, it was a bit to take in all at once. Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went. When we got where we were supposed to be, I was very impressed that the check in and out areas were looped. If you don’t have hearing aids of CI’s you won’t understand that. If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting. The little waiting room, wasn’t all that little, but it wasn’t all that big either. We were early, because I HATE to be late. My first appointment was to get a hearing test…(snicker). But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea. She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing. Soon the doctor came in…..
We talked a bit about my history and he gave me some tests while in his office. A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with. Then he said he was sorry but needed to shake my head a bit. I did not do well with that one. I had to look at his nose while he shook my head. One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”. The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful. I guess that answered that test.
He then said he wanted me to have the hearing test and come back in to see him. So I went out. I still thought it was kind of funny getting a hearing test because I’m deaf. I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything. Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test. Yes, I kind of giggled inside. Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered. Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it. Well, I had just taken meds to help me, since I was really sick after the test he performed. I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day. He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done. I just know I’m going to be sick.
The ENG will show how much vestibular function I have left in each ear. That’s pretty important right now…..because here’s what he thinks and the plan……
He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear. He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants. I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.
He said we have to treat these in different ways. One is to get my migraines under control. He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control. If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation. The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears. He also said, we need to kill my balance system in my ears. We plan on doing this with gentamicin shots in both ears. How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.
I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants. They will confer with each other on a treatment plan. I guess, It will also be good getting a 3rd opinion. The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks. This doctor knows I have been to John Hopkins and they will be conferring with each other.
There are a few questions I forgot to ask. I know many of you are thinking….”You should have written them down.” I did, really, I did. But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh. So I’m going to ask the new doctor. It’s only a couple of things. Nothing that would really change the plan I think. I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear. That’s just weird.
I know I forgot to ask him these things because he was telling me things that had been thinking for a long time. I actually asked for this treatment from my doctor. But he wouldn’t do it. He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect. The doctor at John Hopkins looked at me and said, “more disabled than you are now?” He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help. He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first. I went into the appointment with no expectations. Actually, I expected them to tell me there was nothing they could do. I had no real hope. I told the doctor this, he said….No, don’t give up hope. I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything. He liked that. We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me. Then when I left he shook my hand and told me that it was a true honor to meet me. That shocked me. I told him it was so very good to meet him and thanked him profusely. and went on my way.
A little about the trip itself…….The trip up to John Hopkins was pretty uneventful. We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such. When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance. I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me. I don’t know why. Driving into Baltimore, it seemed so BIG. The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town. The buildings were mostly boarded up, yet there were a few businesses here and there. I can’t imagine how they would ever do any business. One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them. Soon we made it back to our hotel. It was just a very sad detour.
On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am. I thought, we don’t have to be anywhere, why is he waking me up. I read his lips… FIRE! I was awake then!! He pointed to the alarm. The Fire Alarm was going off. I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!! We were all out on the street and almost immediately there were 2 fire trucks on the scene. No fire. I never found out what happened. I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait. That was fine with me. I was very impressed that the fire department got there so fast. The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off. I would have slept right through it.
Well, we had an adventure! I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore. But I spoke too soon. Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.
I was a bit disappointed that we didn’t get to do anything while we were there. The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes. Curses. The next day if I had felt well, we were going to do something. We planned to go to the Aquarium, it wasn’t far from where we were staying. However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes. Yes, I wanted to go see a Bakery! I didn’t even care if I went inside, I just wanted to see the building. It is the bakery from the show Ace of Cakes….that isn’t on any more.
Duff Goldman started it..still owns it, has a second one in LA now. He is often on the Food Network. They do spectacular work, and I was just a huge fan of that show, and I just love Duff. I could just eat him up. I love the story behind his life, and I love his personality. I regret that we didn’t at least drive by Charm City Cakes. Yes, I am a goof. I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery. But hey, what is life without the little things?
I haven’t written in a long time because, I had someone with Meniere’s tell me they read my blog and found it very depressing. This is something I have feared for a long time. I’ve seriously considered stopping this blog because of this very reason. I do not want people to read about me and think that this is their fate.
I wrote a lot about having Meniere’s Disease and what it was doing to me before I knew I had “MORE THAN MENIERE’S”. Even then we knew my case was very atypical. If you have Meniere’s Disease do not take the progression of my disease as a road map of what your life will look like.
This blog is a journal of my experiences. I am far from a textbook case. As my doctor has said…..I am different from any case he has seen. (he works with a LOT of people with many Vestibular issues at Duke, especially Meniere’s…he is the head of the Vestibular Clinic) He has told me that there is nothing else he can do for me. It is recommended that I go to John Hopkins Vestibular Clinic. They do a lot more research in vestibular disorders than Duke does. Frankly, I haven’t found any other place that does more research in vestibular disorders than John Hopkins.
Most people with Meniere’s never go bilateral. Those who do, most never lose their hearing. For those who do, it normally takes a very long time. And the very, few who get to that point normally have very little to no vertigo after that. If they ever do it is very mild.
I’m very different. When I went bilateral, I completely lost my hearing within 3 years, I now have cochlear implants. I still have vertigo often. Even with Cochlear Implants my hearing fluctuates a lot. (by a lot, I mean many times a day…this is far from normal. Some people with Meniere’s who have CI’s do have their hearing fluctuate if they have a vertigo attack, but not like I do.) I will have times where I can go without severe bouts of vertigo for a while then I’ll have a month or so with attacks every day. That is not normal for Meniere’s. This is very atypical for this disease. As my doctor said, I have more than Meniere’s.
I have tried to steer this blog to cover more of my chronic illnesses as a whole, and not focus on Meniere’s Disease. It doesn’t seem to be working out that way. My vertigo and hearing issues are a HUGE part of my life. How do I not talk about them?
I do not want my blog to depress anyone…..I don’t want it to cause people to have less hope. Meniere’s can be a very scary disease….I do not need to add to it. I’ve always wanted to give people hope. To let them know there is life beyond the disease. That the disease is only a part of the patient’s life, it is not all of your life…it is not who you are. Things are just different now.
Right now I really don’t know what I’m going to do with this blog.
If I change the focus, people will still see the past post and can see it as depressing, and disheartening.
I am thinking about making a static post that you have to see first when you come to my blog before going to other post, and then starting a new blog, that is much more positive, and not mention Meniere’s Disease as much. I am afraid I may lose a lot of you. I’ve changed blogs before, and I lost a lot of people.
Maybe I’ll just give it a try. Or have 2 blogs for a while?
I just don’t know.
Right now. This has really been on my mind and has me stuck.
This is a stream of thought post. I just needed to talk and get some things out. So no fixing of grammar or anything. One thing I do want to say before you read this…..I’m not suicidal.
Is everything just so hard right now or is it the life through steroids?
I feel like I’m slipping away. I don’t know who I am half the time. I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and
I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.
Oh I am so ashamed to feel this way. I am just so tired. So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over. And I can’t believe I’m actually writing these feelings out here where everyone can read them.
I do not feel like this. I don’t. This is not how I handle things any more. It has to be the steroids messing with me…it has to be….
But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.
When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right. So conversations with my husband have not been as communicative as they normally are. I have always been so proud of how our relationship has been so good, because we communicate so well. When you can’t talk a lot, communication seems to fail. He thinks I hear things I don’t. I think I hear things he said differently. And things simply do not get talked about. I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday. I lost it, completely broke down, and I’m still spinning about it.
I thought our finances were doing ok. Not great of course. Tight. We do have a mortgage and rent and everything. But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect. We aren’t. We are still in trouble. I’ve been spending money recently. I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”. No I haven’t gone crazy, but I’ve spent when I didn’t need to. We bought Christmas for our niece and nephew that could have cost half what it did. He said, “It’s what we would normally spend.” This makes no sense to me. I’m so distraught. He said….that in about a year we should turn the house over to the bank. What? and we can spend money on gifts??? I can buy things for me? NO. I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.” What? We discussed this before we got a dog. If we couldn’t afford a pet, we should not have gotten one. In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same. (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.) We are in this situation because of me. We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me. No, the house may not have sold yet, but we are nowhere near even getting it ready. All because of me. I have gotten too sick for him to leave me alone to go to Durham and take care of things.
Now, how can I not feel guilt about being sick?? How can I not feel guilty for every doctor appointment I have? How can I not feel bad about every extra thing we have to spend because of my illnesses? How can I not feel bad about the trip we have to take to Duke….tomorrow?
We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this??? I cannot allow my husband to lose everything for me. I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me! NO! I will die first. Please, please, let me die first. I simply cannot live with this guilt or with this lack of quality of life. How do you choose? How do you choose? Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever. Or do I stop it. and say enough. I accept that life will be like this.
I have ups. We’ve seen this, over and over. I have some good times. I had them not long ago. I went for over 4 months feeling so much better. Then I have times like this. Will I be like this forever, or will I have the good times again. Who knows. I cannot predict the future, and I have to stop making up the worst case scenario in my mind.
We have to get more stable financially before I can allow him to sacrifice any more. He does so much. He is so exhausted so much of the time. He doesn’t even see that it is because of me. At least he loves his job now. It is not draining him. He really enjoys it. I don’t worry about him so much there, but am I jeopardizing it? I hope not. Right now that is all I can do. I have to trust that his boss really is as understanding as he says he is. I have to believe. I know his hours are flexible….I hope they are as flexible as they are making them. He does a lot for me. They work around my appointments. Sometimes he leaves in a moments notice when I have an attack. He always gets in the hours, he gets his work done….he says that is all his boss is concerned about. But I am concerned. I do not want him to risk this job over me. (they did just put him in charge of a project, so they must believe in him, right?)
I have to be more involved in the finances and everything as often as I can. I have been hiding. I have not been able to handle the stress of it. I do not deal with instability.
I’m not dealing well with not being able to do anything. With not being able to help at all.
I’m simply not dealing well.
I do so wish we had some help. I wish someone would give us a maid for a day as a Christmas present. Or better yet, a maid service. We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect. For this tiny place, I’m sure it wouldn’t cost much….well for some. But it would get the deep stuff done. Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately. (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)
I’m tired. So tired. Between the spinning head and the aching back, sleep is hard. And now my brain will not shut off….I worry.
Please Please tell me I will be able to deal with this better again after I get off of these dang drugs! But then will the awful vertigo get worse again? I live like that either.
At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.
I woke at 8am with my stomach hurting…ugh, steroids. Then I thought, “Oh good, it is better today, knock on wood”…and I really did! I took an antacid for my stomach and went back to sleep.
I woke up at 10am with horrible heartburn and spinning. sometimes you just want to cuss!
I thought, ok….slow. I can handle slow. I hope. I took meds and slowly, very slowly started to get up. Ah…let’s just lie here for a minute.
Try again….slow. VERY SLOW…. I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second. Grab my walker….oh nice walker, I love you so much. slowly I get up…I am sure no one has ever seen anyone move so slowly. Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good. I start to head to the bathroom. WAIT…phone! I grab my phone, just in case. If I fall, I need to make sure I can get help. and off to the bathroom. I DID IT! I got to the bathroom ALONE! During vertigo! it was a very slow spin but I did it!!
I did it 4 times today!!! I have been slowly spinning all day!!! If I keep my head exactly still things are pretty still, but if I move, WHOOSH!
This morning I was very proud of myself. Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day (meds and such) and go myself to the couch. Once I went from the standing position I was in to sitting the vertigo went WILD! What on earth? who knows this is the most bizarre thing in the world, no rhyme or reason to me!
So I collapsed and tried to calm down…and hung on! Whew!
It slowed, and I was ok, but not great by any stretch of the imagination.
It’s about 11am by now. Stuart had an appointment this morning and texted to check on me. I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great. So he did….and I sent him on his way! Even though I was not doing well when he left. It is now almost 4pm and I have done a good job of handling things today.
I’m proud of me.
I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart. Things I didn’t want to admit to. I was ashamed to admit I wasn’t handling things as well as I thought I would. But I got through it, and learned a lot along the way. Of course, I’m still going through it….so…we’ll get there.
One thing that really helped me get through all of this…..
So I feel bad about it…feel bad. That’s OK. Acknowledge it. Don’t feel so guilty about it. I don’t have to feel positive all the time. My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad. I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either. Accept it, and have some self compassion.
Things I should note today…. woke feeling better around 8am. Woke with vertigo at 10am. Had rotational vertigo all day, various degrees of spinning speed. Right side of face/head felt funny. (by this I mean, it feels thick). Had a migraine. Took a Maxalt, pain got better, but side of head sensation did not go away. *could some of the vertigo be migraine related? Ears feel full, but not as full as they have over the past few weeks. When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear. there is not water in there if I feel in there, but it feels very strange. am I just noticing this because I’m hyper aware now?