Tag: Deaf

Better day, kinda.

On By WendyIn Chronic Illness, Migraines5 Comments

I had a better mental day today, physical kicked my but!

No flash backs, and was able to really sit down and talk with Stuart.

My allergies are out of control! It appears I’m now allergic to my cat. It’s so hard. I’m determined not to re-home him, but I have to find an antihistamine that works! The pharmacist told me about a prescription one, I’m going to ask my doctor.

If this doesn’t work I’ll see if I can find someone to bathe him, or shave him. Anything!!

Right now I’m spending most of my time in the casita (my studio I rarely use, but that’s a different story). I’m lucky I have somewhere to go, I have a much higher understanding and empathy for those I know with a cat allergy.

It’s late again, and I’m awake.

I’m scared.

Not the same reason, thankfully.

I’ve been having vertigo on and off all night. Waking up in the middle of the night with vertigo really sucks!

So I’m scared.

I got the latest COVID booster and my first shingles shot (I didn’t know it was a two shot vaccine… Ugh). My shingles shot side is already so sore I can barely use my arm. The other side isn’t bad at all, I feel it, but it’s minor.

Oh I did a little bit of art today, that was nice. Not finished, and I’m just covering some boxes with a mixture of torn newspaper background, with paint added in a decorative fashion. Some intuitive art.

I also sent a special complaint about the security guard. I strongly incouraged them to give their security personnel better training on how to deal with patients, especially disabled patients, with an emphasis on dealing with invisible disabilities.

I didn’t say it, but the way I worded it let them know I’m an advocate for myself and I’m not afraid to have his they deal with the ADA investigated.

I may be afraid, but I’m still strong, and brave.. even if I don’t always feel it.

Never Again! Ketamine, and hospital bullying

On By WendyIn anxiety, Chronic Illness, Health Care6 Comments

This post may contain triggers for some. It talks about bullying, hospitals, trauma. Please take care of yourself first.

This Ketamine treatment was nothing like the first one.

I will never go though this again….NEVER.

I don’t remember anything real from the time they started the infusion until shortly before we left. I hallucinated the entire time, or maybe just lost time…who knows. Yet S tells me that I seemed lucid at\times. I knew there was a chance I could have hallucinations, and dissociate…but this was beyond what I ever expected.

I’m told I was having incredible abdominal pain…this happened last time, but only on the last day, but it was shrugged off as GERD. I received Mylanta and was discharged. I ended up in the ER two days later with severe pain and diarrhea that had been happening since I got home from the hospital. I was given a CT scan and test were taken, I was told I didn’t get any of the bad bugs (like Cdiff) in the hospital but they thought I did get something there. So I was put on a liquid diet for 2 days, followed by a bland diet for another two days, I was also given Dilaudin (a synthetic opioid derived from morphine) in the ER. All of those things relieved it.

This time I had severe pain during my treatment, again waking up screaming, and vomiting this time….I remember none of this. I was given meds, I don’t know what, but it didn’t help much. Again they wanted to discharge me (more about this later). I ended up back in the ER the day after I got home. First I was given Morphine, but it made me itch so much, it’s really hard to deal with intense pain and itching at the same time. I was also given two other medications, dilaudin, and haladol. The pain was so very intense. They actually thought I had constipation with the diarrhea. What? Who’s heard of such a thing? She said it showed on the CT scan, it also showed some “irritation and inflammation”. There is some condition called called paradoxical diarrhea or overflow diarrhea. It happens when watery stool leaks out around hard stool in the rectum. Have you ever heard of such a thing? I sure hadn’t. I don’t understand that, I was having regular BMs before the diarrhea. She wanted to admit me to give me a laxative to see if it helped. I was not willing to do it. I could do laxities at home. She also suggested a bland diet. I also took a stool softener, and magnesium oxide, and have had normal BMs since. I still don’t believe I had paradoxicol diarrhea. At least that part of me is fine. I am still having some stomach pain, but nothing like I was having. I’ll discuss it with my new PCP on the 16th. I’m so grateful I was accepted by this PCP, she used to be a headache specialist at Jefferson (a very prestigious headache clinic) so she is better suited to work with my doctor at the clinic in Phoenix, so I may not have to go there to get some treatments. This office came very highly recommended to me, by another doctor of mine. I hope they really are as good as they say.

More bad stuff

Okay so that was part of the horror of the ketamine. Although some of the visions were interesting. I had to have a catheter many times. They said (according to S) they don’t like to leave it in because you are more likely to get an infection. But the visions that came with it…it’s hard to explain. One of them I saw women surrounding me in ceremonial garments. I was the center of some ceremony. It was strange, but it didn’t scare me, I felt like I was in a place of honor. Other times I did not have good visions. I I wasn’t sure what was going on, I felt violated. I still do. I had no say in what was happening, how can you not feel violated when people are sticking things up your urethra when you are out of it?

There was also a time that I thought there were two Stuarts. One was on one side of the bed, the other was on the other side. It was so strange. I told him I had to smell him to make sure he was the right Stuart. I got very agitated by the second Stuart, he didn’t smell right and was very jealous of the real S, but I had the right one there so I wasn’t scared. S told me I talked about gnomes a lot, that’s interesting, but I don’t remember it.

I’m told when I was hurting so badly I called out for my mother. She died 29 years ago. I still miss her so much. I do always wish she was here to help me through this, help us through this. I’m just so very grateful I have Stuart, and I have such good memories of my mother. I was thinking how hard my life has been, so very hard. How could I be so unlucky? Then I realized I’m one of the most lucky people in the world! I have an amazing husband to help me through this. How could I be unlucky?

I’m getting way off track, as usual, at least that was a good thing….. so let’s get back to this traumatic hospital experience.

First Discharge attempt:

The day after the ketamine was stopped I was set to go home. We were all packed and ready. I was getting in the wheelchair and then said, I don’t think I should leave with so much abdominal pain. The nurse from hell tried to force the issue, then I had a seizure. Other nurses and a doctor came in and said I wasn’t going anywhere. I don’t remember any of this. None of it. How could I have felt like I was ready to go home, with the only symptom abdominal pain, and not remember any of it? After the seizure S told them that the seizures happen when I’m under an extreme amount of stress. It hurts me that I’m having psychogenic seizures again.

Being forced to leave:

The next day they gave me Dilaudin to help with the pain. They finally listened to Stuart. Shortly after the nurse came in with my discharge papers. Stuart said he wanted for us to stay for another 30 minutes to make sure I didn’t have a reaction to the medication. We thought that was all there was to it. I was eating my lunch when suddenly the nurse from hell and an entourage of other nurses and a HUGE security guard came in to escort us out. They had “patient belongings” bags and were ready to throw my things in and forcefully make me leave. I was very concerned and agitated. I kept saying I didn’t understand, why couldn’t I finish my lunch? Why was this happening. No one would answer me, so I got a little loud, I didn’t scream or anything, I just wanted attention since I can’t hear I thought maybe I was missing something. S was busy getting our things in the suitcase so he couldn’t be that help, I doubt they would have said much for him to translate anyway. When I raised my voice the security guard came over to my bed and loomed over me, I shouted to him “I’m deaf and do not understand” it was obvious he didn’t believe me. The nurse from hell tried to touch me to get me in the wheelchair, I did forcefully tell her “Do not touch me”. I got in the chair myself. I did keep saying that I didn’t understand. While we were waiting for the car….yes they all waited to make sure we left….I turned to that nurse, she was the closest person to me…and said I wanted to see who was in charge. She said she was….she was the charge nurse, but she was far from who would be in charge. I told her I wanted to know in writing why I was being treated that way. She said, “it’s been noted”. I asked for her name and she wouldn’t give it to me. I also felt like they put people between me and Stuart so we couldn’t bond together. They rushed me out so fast I didn’t have my mask, and the charge nurse evidently didn’t have hers on since I could read her lips. I am sure that the whole process lasted more than 30 minutes, if you include the time before they came in. Why did this happen? Bullies, that’s all they are….Bullies.

I will NEVER be treated like that again! I will refuse to leave until I at least get the people’s names. We made a formal complaint, I’m sure nothing will come of it, but they can’t find out what the security guard’s name is. I don’t want anything like this to happen to anyone else.

Another strange thing, I was told that a doctor came by that morning and I told her I was ready to go home. She’s the one who ordered the Dilaudin, they finally listened to Stuart, then said I could leave. She’s my headache doctor’s partner, so I do trust her. But I don’t remember any of that. I really don’t remember anything until I was eating lunch. It’s like my brain shut down because of the pain….or the ketamine really hit me hard….I don’t know. Stuart is concerned that I don’t remember the last two days after I was off ketamine and was ready to leave. I do remember every bit of those people forcing us to leave. They didn’t even ask, they didn’t come in and say that they couldn’t allow me to stay any longer….for whatever reason…they just came in and started to pack up my stuff and forced me out.

I’m now having nightmares. It’s hard for me when I go to bed, even when I’m not sleeping, I can feel that security guard looming over me. I can feel the hate in his and the nurse from hell’s eyes This is one of the most traumatic things that have ever happened to me. I’m very afraid the seizures will become a regular occurrence again.

I’m trying so very hard to not think about the past, I know it’s over and I’m safe….but ,my body doesn’t seem to know it, it is fighting hard. I’ve lost all hope. I keep telling myself that’s not true, but it is. I was certain this treatment would help. And it did the first time, until I fell. I was outside in the sun without my hat! I had so much relief. I did feel like it was helping my migraines at first, but the trauma those people caused, I believe that negated every good that the ketamine did. Now what? The only other thing I know of is lidocaine infusions, but I don’t know if I can go back in that hospital. I’m also jumping the gun, who knows what else my doctor has up her sleeve.

I’m trying so hard to be mindful. S keeps trying to get me to stop and really breathe. That has always helped before, and it really helps him. But right now, it isn’t very helpful.

More Horror:

The night after the ER visit I started having akathesia, this happened last time too, so I was prepared with medications from my psychiatrist here. she helped before. But it didn’t work. I was pacing so much! I was anxious. I couldn’t be quiet. The only relief I seemed to get was in the bathtub. I took 7 baths in less than 18 hours. Crazy huh? My psychiatrist increased the dosage on the meds and I finally started getting back to normal. I was to take them for 3 days, when I tried to stop them, the akathisia and extreme agitation started again. So I’ve been on a lower dose since then. I sure did sleep well on those meds, too bad I don’t sleep like that all the time.

I think that’s all….I hope that’s all.

I do have another major stressor going on right now, but it’s worrying about someone else, not anything about me. Nothing I have any control over. Is there anything I have control over? Not my life, that’s for sure.

First Meeting

On By WendyIn Chronic Illness, Deaf6 Comments

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.)

Weekend Warrior

On By WendyIn Chronic Illness, Headaches, Migraines11 Comments
One of the last of the wildflowers 2019 Tucson – W Holcombe

I missed writing yesterday, it was such a full day I just didn’t get it in.

Before my painting class with my niece I decided to take a Maxalt, and a couple of toradol with a little caffeine to see if I could get this migraine to a level where I could not only be present for the day, but also enjoy it a little. The pain did get to a more tolerable level, and after an hour I took the 2nd dose of Maxalt (if the pain doesn’t subside with a first dose you are supposed to take a second, I normally don’t because I don’t want to run out of my medication too soon, but on special days I will), after the second dose the pain was reduced more! Yay. The class was fun. I was sad because I cannot understand most of what my niece says, she speaks very quietly most of the time and does not move her mouth much at all. I’d love to be the aunt she could whisper too and tell secrets, but I can’t hear most of what she says. It makes me so sad. It did bother me that I did not get a thank you at the end of the day, I wasn’t surprised, that saddens me too. I do think she had a good time, though.

After our painting class we went out for pizza with the family. It’s always a mixture of emotions when I spend time with Stuart’s family. I like the feeling of family, but it can be a bit too much for me all at one time, and Stuart’s sister is very boisterous. I can only take her in small doses. We had to go back over to their house for some things after lunch so my time with her was close to hitting it’s limit before we left, and I was starting to have more pain.

When we left I was still feeling pretty good though and decided I did not want to waste it. I knew I might be pushing it a bit too much, but it’s a good chance that the next day could bring increased pain no matter what I do, so when I’m able, I’m taking advantage of it. I found out about this little clothing store that carries a style of clothing that I like so we went to check it out. Funny thing, I got 2 dresses, and neither one of them are in the style that I went there looking for. ha!

After that we were both bushed, but we wanted a treat so we got frozen yogurt before we went home and spent the evening watching baking shows and old Dr. Who’s.

Today I woke up feeling pretty good. Ate breakfast, picked up a few things around the house, then set out in the backyard to poopy scoop, something I haven’t done in a very long time and I’ve been feeling very guilty about it. I walked out and saw that the little rake and pan that I use to do it had been moved. “Oh no, my landlord felt the need to pick up my dog’s poop!” I felt so ashamed. I told Stuart and he said he wouldn’t feel bad if someone did that he’d just thank them. Ugh! I thought well no wonder stuff just accumulates on the porch and things are not put away….he feels no shame about things. Our back porch looks awful, he should be ashamed. So I told him so! Then I went out there and cleaned up the back porch! I moved and rearranged plastic totes (they are empty), I swept down the cob webs, I swept off all the totes and pool floats, I swept the porch (boy was there a lot of little mesquite leaves on there!), I wiped down the grill, and I got Stuart to get rid of the 2 cardboard boxed that were back there. Now my back porch looks all clean and organized, and we look like we take pride in our home. I am absolutely amazed at how much I can do when I’m mad! The amazing thing is, I could sweep like that and it didn’t hurt my back much at all, but have me stand at the kitchen counter and try to bake or cut up veggies and it hurts so bad it brings me to my knees.
(Yes, I know the whole thing about feeling shame sounded snarky, I felt snarky at the time. I shouldn’t have gotten mad. I know a lot of my anger actually came from feeling that I can’t do my share to help keep up the house and the yard. Stuart and I talked about it, and he says he understands, I think he does, and I still think he needs to feel a little shame now and then. lol)

After all that adrenaline flew out of my body I fell into a heap in my chair and crashed. Then after about an hour I started seeing the world vibrating and going dim, I suddenly felt high but I hadn’t done anything to cause it, then the pain hit; a vestibular migraine had started. It wasn’t quite lunch time when I curled up ready for the end of the day.

I had a very full weekend, I got a lot of things done and had some fun, now for some sleep.

Journal Day 2 – Yoga Therapy

On By WendyIn Chronic Illness6 Comments

It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.

Firs Saguaro bloom I saw this year.

My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.

Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.

After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol

We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.

I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.

There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.

Stop Talking!!

On By WendyIn Chronic Illness12 Comments

I can’t stop talking. I talk on the time!

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

Walk4Hearing

On By WendyIn Chronic Illness, hearing loss, HLAA15 Comments

20170920_131922
How I hear. Bilateral cochlear implants. Cool Huh?

The Hearing Loss Association of America‘s Walk4Hearing in North Carolina is coming up soon on October 15th, and I’ll be walking. (fates willing)

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.

Going to the Movies with Hearing loss

On By WendyIn Chronic Illness, Deaf15 Comments

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.

captions
This is like the caption box I used.  image source 

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.

captions for theater
this is what the captions look like.   Image source

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.

lego batman
image from Wikipedia

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.

captions sony glasses
this is an example what some of the glasses look like.

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

hearing loop
image source here

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. 

 

#HAWMC 17 – Song of Silence

On By WendyIn #HAWCM, Chronic IllnessLeave a comment

Today is Day 17 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

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

Artwork by Wendy Holcombe – “Fractured Ear”

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

Confessions of a Chronically Ill Deaf Woman

On By WendyIn Chronic Illness, Deaf4 Comments

confessions

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)