I met someone yesterday who touched my heart, she cleaned my house, but that isn’t what made her special.
Since I’ve been having this flare I haven’t been able to keep up with the house cleaning so we decided to have someone come in to help out. I was looking on the Nextdoor site and saw where a neighbor was asking about a cleaner for her home, several people answered her but one person’s comment struck me more than the rest so I messaged her and asked if she’d be interested in helping us out. Lucky for us, she said yes. That’s how we met Lennie.
After several texts back and forth we set up a date and she came over yesterday. When she came to the door I felt I would like her instantly, and within the first 5 minutes I knew I was right. Her smile lights up her face and she is genuinely warm and friendly. We have a sign in our front yard, I posted a picture of it on here before, it says things like “Love is Love”, “No Human Is Illegal”, “Science Is Real”…. This sign means a lot to me. It says a lot about what I believe in, and who I am. When Lennie came in she mentioned how much she loved our sign, she said she saw it and thought “These are mine kind of people.” I gave her a high five.
We chatted some as she went about her business. She knew from our messages about some of my health issues, but I didn’t know she had a few. Her illness was not supposed to be chronic, but it did have some long term complications. She really understands going through a long ordeal before being diagnosed.
The main thing I really wanted to write about was how she reacted to my hearing loss. When she found out I lost my hearing just a few years ago she first asked the same thing everyone else does, “Do you know sign language?” I wonder why that’s the first thing people ask? You know when you are not immersed in a language it’s hard to become fluent in it, especially at my age. Taking a class when you are fighting vertigo and migraines on a daily basis is almost impossible. Absorbing a foreign language while dealing with those? Well I haven’t been able to do it. But anyway, after we discussed all that, I promise I didn’t say anything rude, she asked me something no one else ever has: “Has losing your hearing been difficult?”
My first instinct was to say “No”, and just brush it off. I started to say that I thought it was more difficult for Stuart, but then I stopped. I looked at her and felt tears well up in my eyes, “Yes, yes, it has been very difficult.”
I was taken aback by the fact that she asked, and genuinely seemed to care. No one has ever asked me that before. I’ve never gotten the impression that anyone has felt that it has been very difficult. I think some people see that I have some challenges, but I don’t think they understand how difficult it is, and I think it would make them uncomfortable if they knew. I think a lot of people think my cochlear implants “fixed” my hearing loss, and others think I’m really good at handling it. Truth of the matter is, it’s extremely difficult, my CIs are far from perfect, and I think I handle it pretty well but that doesn’t mean I always understand what the heck you’re saying or that it’s any less difficult.
Meeting Lennie made me realize that I can still make connections with people in the “real world”. It may still be difficult to nurture a friendship when I can’t drive and may often have to cancel things and I can’t hear in many situations…but Lennie made me want to try.
You never know what kind of mark you may leave on a person, try to make that mark a good one. Look what Lennie has done for me.
(I will try to post about some of the difficulties I have dealing with hearing loss soon.)
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.
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)
My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).
As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections. However, he did send me to vestibular rehab.
I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control. I can’t say I’m having fewer migraines but they do seem to be less intense. It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack. (If the vertigo is caused by MAV then gentimiacin will not help.) You may recall that I had seizures in February that caused me to be hospitalized. My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures. It appears this may have been my problem. I’ve since stopped taking Topamax and the seizures have subsided.
The vestibular rehab is going well. I haven’t been to a lot of sessions yet, but so far so good. When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver. This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me. (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.) After this treatment I have had very little BPPV symptoms. On the way home from the first visit I had a bad vertigo attack that last hours. Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out. I still have a few sessions to go before being reevaluated.
Now, about the doctor situation. I will be seeing a new doctor on the 22nd, next Tuesday. It’s kind of amazing how I found this doctor. Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday. When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues. I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that. They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.
I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service. (they will only map CI patients who were implanted by their office) As luck would have it, her husband works for this medical group. He is an otolaryngologist. He is new to the office and is working to get things better there. He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing. He told me he would be happy to take me on as a patient, or he recommended another doctor in the group. He just wanted me to have a good experience there. Wow. I decided to go to see him. He is very willing to confer with the doctor at John Hopkins. He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work. I think it’s more complicated than that, but that’s a big part of it. The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there. Is that just a lucky thing or what? I’m so happy I reached out to her, you never know who may be able to help.
How am I feeling about my treatment? Good, so far. I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections. I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines. I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21). Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.
So, that’s where I’m at right now. Very grateful everything is going so well.
On the 18th I had an appointment with my neurologist, she is a headache pain specialist, to get the Botox shots for my migraines. I get these injections every 3 months. They do help. No, they don’t take away all my migraines, but I don’t have to take near as much medication, and I’ve noticed the migraines I do have are very often much less severe than they used to be. Also, No, they don’t work on wrinkles.
My doctor is a little lady, so very cute and sweet. She reminds me of the good fey (for those of you not into fantasy books, according to Wikipedia, “Fey is an umbrella term referring to fairies, pixies and sprites in the broadest sense“…this is a very simple definition, but you get the idea). I have told her she’s my sweet good fairy who gives me little bee stings that make me better. It has become our little joke. It’s also quite amusing to me as fairies are normally very mischievous and often not of a good nature…so giving me little bee stings would be something I think just might do! *giggle*
This dear sweet woman has the softest most feminine voice I think I’ve ever heard. I cannot imagine that she could ever speak loudly, believe me, I’ve seen her try. She has tried to hard to make sure I could hear her, but I just couldn’t. Therefore, I’ve never been able to have a conversation with her. She always looks so sad, yet hopeful, when talking to me. Sad that I haven’t been able to hear her, yet hopeful that I will be able to some day. I have been seeing her since before my first Cochlear Implant surgery. Now I have 2, and the last time I saw her I had recently had the second one turned on. I still couldn’t hear her. She looked so….well, sad.
When she walked in the room yesterday the first thing she said was, “How’s your hearing? How are the new CI’s working?” And I answered her. I heard her!!! So I could actually answer her, not stare at my husband waiting for him to answer for me. She was absolutely giddy! I know I kept her too long and made her get behind schedule because she and I just chatted for a little while. I’ve never seen her so delighted. She told me when she saw my name on the list of patients for the day she was hoping I could hear. Isn’t that just the nicest thing? I thanked her for thinking of me, she answered that she thinks of me often. Wow! What a great doctor! And she’s not even my ear doctor! (Just a note, if you are suffering from Migraines, try your best to find a neurologist who specializes in headache pain, this has made the world of difference for me. It has given me a better quality of life…at least on that front. If you want to ask me about my doctor at Duke, feel free to write me. Look under the About Me page.)
After receiving my “B” stings. (yes, B stands for Botox…hahaha…I’m being a little silly today too!) We wrapped up the visit and she started to leave, I came so close to grabbing her and hugging her, but I wasn’t sure about how she would feel about that. She started out the door, then suddenly came back in and grabbed ME and gave me a hug! I was so surprised, she was just so thrilled about my progress! She made my day! I would have been thrilled at the fact that I could hear her, but to have her get so emotional about it, well that made me feel so loved.
Before this visit I thought about requesting CART (Communication Access Realtime Translation) for my visits to see her. I decided not to because while giving me the shots she spends a lot of time behind me, and I have my head down so I can’t see anything, a translator wouldn’t help much. To find out more about CART, please hover over the word CART and click to follow the link to the National Association of the Deaf. I’m so thrilled I didn’t have to use this service to be able to hear my physician. Hearing her without my husband’s help was so liberating. Just a tiny bit of my independence restored.
I read about this a lot, and I wonder about it myself….when we go places, especially to the doctor and we tell the staff that we need special attention to be understood, or to understand….or to walk, ect… Why do we have to say it again, and again, and again!
Why don’t they listen to what we say? It has always bothered me, even before I became as ill as I am, that first you would fill out all the paperwork stating why you are at the doctor’s office, then you have to go over it with the nurse, then again with the doctor….why don’t they just communicate? Do they think I’m lying? “If we ask her the same questions over and over we might get different answers.” Just talk to each other, and listen to your patients, please.
Now that I have issues that must be addressed for me to get what I need from a doctor’s visit, it’s worse. I try to be very understanding about people forgetting that I can’t hear, or that I have balance issues and use a walker, therefore I walk very slowly. I realize that humans take a long time to develop habits, and most nurses and staff I see change a lot, or I don’t go to their office much, under these circumstances I do my best to pleasantly remind them, over and over, that “I can’t hear you, I need you to look me in the face so I can read your lips, and I need you to talk slowly.” They will say they understand, but then they will look at their computer and talk instead of talking to me. Often I will just act like they said nothing to me. My husband will turn and tell me what they said and I will answer, “Oh, I noticed you were speaking but since you weren’t speaking to me I thought you were talking to my husband.” I get a blank look, then a light bulb….OH yeah! She’s deaf. Then they do it right for a question or two, then it goes back to talking where I can not understand. A friend of mine who writes at: Another Boomer’s Blog, says she wants a shirt that says DEAF on the front and STILL DEAF on the back! Yep, Still Deaf. She also has some great posts about this subject, you should really check her out, especially if you have hearing issues.
As I said, I do understand that most people are not used to dealing with people like me. They aren’t used to dealing with the deaf, and they aren’t used to dealing with someone who has to walk slow with a walker, or suddenly sit down because of balance issues. Yes, I have nurses try to show me to my room and just take off and leave me. I just say, “I’ll get there sometime.” If they turn a corner, I sometimes just stop. When they return, I simply tell them, “I didn’t know which way to go, I couldn’t see you.” I really don’t mean to be rude, and I am compassionate, they are used to doing their job one way, and I’m asking them to change. However, what happened to customer service, why are people not mindful of what they are doing….everything they are doing? If a patient comes in, you pay attention to their needs, PERIOD. Just as you should for any person you meet. (you open a door for someone who needs it, you pick up something a child dropped…..you help people out when you see it, why doesn’t this happen all the time? Or am I just assuming most people would treat strangers like that?) We need to pay attention to others. Show love and compassion, why do people often have to be the “squeaky wheel” before they are paid any attention to?
At my otologist’s office I do not accept that the staff is not trained to deal with people who are Hard of Hearing or Deaf. When I check in, they are looking at their computer….these same people have been working with me for over 3 years, I normally check in with the same person, he knows my name, he knows my husband’s name, but he is not trained to deal with a deaf person. He does finally understand, and he moves his mouth more clearly than the other front staff, that’s why I try to check or out with him. But why are they not trained better? I have one nurse who normally works with my doctor, she is a dear sweet person. She really cares. Sometimes she will slip up and speak while not looking at me, but she usually catches it and quickly changes. Also, she will come and get me in the waiting room, the other nurse that calls me back occasionally, just calls out my name. I can’t hear her! Why does it not say in big red letters on my paperwork, DEAF….and any other instructions they may need. Why?
I had a test performed a couple of years ago at a different hospital. I had to check in and I was shocked at how trained the check in person was. I don’t know if everyone there was as great as she was, but she said they all had training on how to deal with certain situations. She spoke clearly, looked at me, marked it on my chart that I could not hear and would need assistance. My husband was with me, but that didn’t make a difference, they treated me like I was the patient and I had needs, they didn’t treat me like my husband was supposed to pick up the slack for me. This hospital assigned a volunteer to walk me to my testing area, to stay with me until I was called back, she escorted me to the room I was to be in and explained to the person performing the tests about the situation. You could have blown me over with a feather!
So now, I ask why? Why don’t people listen to us? (no matter what your special need) Why aren’t more people trained like the staff at the other hospital I went to? Why aren’t we all more compassionate towards others?
Yes, people should understand when we need special arrangements so we can be less disabled and more independent. Not only that, but we need to get the same care any other person would, that is our right.
On the other hand, we also need to give people some slack, no I don’t mean the whole rope…just help them learn. Think about the person who is treating you this way, how have they been trained? How hard would it be for you if you were in their place to suddenly have to do everything different from you are used to? What if this person has just dealt with an emergency and they are still shaken up but trying to do their job without letting you see it? There are just so many things that can contribute to why someone isn’t understanding about what we are going through. Don’t get upset….at least not at first….realize, it’s not about you, it’s the fact that they are human and humans are not used to change, and we simply don’t get it all of the time. Try to pleasantly remind them what you need.
My husband used to always step in and try to make things right, but I want to understand the doctor and nurses myself, I don’t want to need him to always be there….plus, I’m not sure he always remembers everything they say. So I started telling him to be quiet unless he was asked something, or if he needed to ask or input something (he is my caregiver after all), but if he talks he will have to stand by the doctor so both of them can face me, so I can hear both of them at the same time. No more him beside me, and the doctor in front of me. There are types of interpreters that I can request to help me at the hospital or doctor’s office, I will explain these in a later post, and why I haven’t taken advantage of them.
I have found that simply not answering, or acting like I’m lost because I can’t keep up, has helped. Just asking again doesn’t seem to do it most of the time, but if you make it harder for the person who is learning how to deal with you, then they are more likely to change their ways faster.
Of course, some people will never learn.
and often the people closest to us are the hardest people to understand a lot of this….but that’s for another post.