What’s it like to have a Cochlear Implant?

On June 24, 2016 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease16 Comments

me with CI 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)

cochlear implant 2 — This is a photo of a microphone, processor, and transmitter. You can readily see the microphone that hooks around the ear but there is one at the top you can’t really see. Many processors have microphones that are not readily seen.

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!

My Visit to John Hopkins

On December 14, 2015 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness16 Comments

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?

Don’t Let My Situation with Meniere’s Disease Depress You!!

On June 30, 2015May 24, 2016 By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease23 Comments

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.

Love and Peace to all of you!

wendy

It’s just so hard sometimes…

On December 8, 2014 By WendyIn Chronic Illness, Meniere's Disease, Vestibular Illness3 Comments

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.

Why does it have to be so hard????

I did it Alone. Spinning another day…

On December 2, 2014 By WendyIn Meniere's Disease4 Comments

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?

Not the post I planned….

On December 1, 2014 By WendyIn Chronic Illness, Meniere's Disease6 Comments

So I had this post all planned out. I had been working on it in my head. I even had a few little illustrations to go with it. Neat huh?

I really wanted to talk about what has been happening to me over the past few months. All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out. I haven’t been able to write much. To read much. To do much of anything because of the vertigo. Finally, I thought I could do it. I started getting it together. but that’s not how things happened…..

I started getting ready for bed night before last. I had had a strange day. I hadn’t had vertigo, but my ears felt off. (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.) I also had this weird fainting type of spell. I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun. It was strange. I had to fight hard not to just pass out. I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up. This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better. This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar. I’d just eaten a banana, my blood sugar should not have been low. My blood sugar was indeed not low. It was on the higher side of normal…hmmm. Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar??? what on earth? Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better. But I still felt off…and I admit, I ate more, I ate too much probably. But I felt better.

A little while later I went to get ready for bed. I was brushing my teeth and looking in the mirror and thought…why am I moving? Then I feel it and think…”oh shit.” Yep, vertigo. No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed. (I always try to pee really fast before it gets bad because I always have to go when it happens. It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time! And if I vomit, I will pee too, complete loss of control. So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip. WRONG! It was a long and bad. Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again! can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day. Yesterday. I did. I felt bad all day yesterday. I hoped it was just that hangover feel from the night before. Then..Last night. vertigo. just a little, all night, I just kept waking with the bed moving. I handled it.

This morning I woke….AHHH! FULL FAST SPIN! Stuart’s at work, and I have to GO TO THE BATHROOM! and I do not mean just for my morning pee. Oh hell. Whoosh! Whoosh! Whoosh! I can’t move. Which world do I try to step in to? They are moving so fast. Whoosh! Whoosh! Whoosh! Oh I am so sick. More meds. sick. I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH! I type, “Spinning” I think…and hit send to Stuart. I don’t want to bother him, I want to be able to do this alone. But how? I know other people do. How do they do it? How do they go to the bathroom? How do they survive without killing themselves (accidentally or on purpose?) Since this has gotten so bad, I have always had Stuart to help me. I’ve only had to deal with an attack a very few times alone. That was so long ago. It was so hard. I don’t know how to not ask for that help from him. How do I do this alone?

Soon I got a text back. I don’t know what it said…..I texted….”help” hit send.

Then I called on voice. I only have to hit one button. I did not have my cochlear implant’s on, so I could not hear anything. I saw the little numbers start counting, I don’t know if he picked up, I just started talking. “I’m not hurt, I have to go to the bathroom. I need help for that. I’m not hurt. please just come help me to the bathroom. I’m not hurt. can’t get to the bathroom, really have to go…..” then said I hoped he heard me and hung up. I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited. and held on as hard as I could. I knew I would soon have to try to crawl to the bathroom…..but then what? I wouldn’t be able to get up on the toilet…..what was I going to do? I kept trying to think. the bedpan was in the bathroom. Ugh! The trashcan? maybe. I’m going to kill my back even more. “I have to GO! I’m going to soil myself soon.” (I really think I may have ended up soiling myself before I would have made the decision what to do. My body wasn’t going to wait much longer.) Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here. Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways. *sigh*

The vertigo won’t go away. It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse. I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long. We rescheduled it for…I think Stuart said a week or so out. I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there. What can he do? I have no idea. What is causing this? I have no idea. I thought I had an idea, but now, nope. Where do I go from here? if my trip to Duke comes up with nothing….I don’t know. One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything. I have to consider Stuart’s job. His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing. First I injure my back and now this? I’m afraid he is being understanding on the outside and not so much on the inside? Stuart is getting his work done. He works the hours, just often not normal hours. Today he is now working at home. He is going to talk to his boss again about this to ease my mind. He likes this job, I do not want to jeopardize it because of me. But I do not know how to take care of me during the attacks by myself. If they are short, fine. But when I can’t walk all day long because of it? How do I go to the bathroom? Get water? food? We can’t afford to get me a helper, and who would know when I’d need one? (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up. It is crazy to feel so guilty about being sick. I didn’t do it. I have no control over it. Yet, this is the one thing I find the hardest to deal with….guilt. I am so very sorry to be such a burden. At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden. How can I not feel guilty? How can I not feel that I am causing so much trouble for my husband? Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick. Guilt much?? I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt. It’s a work in progress. I can say it is much better than it used to be. I don’t hate myself, and I don’t think of myself as a complete failure. Those used to be huge thoughts that ran through my mind. Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence. That’s a sad thing isn’t it? Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff. I really do like me. I try my best to be a good person and I think that’s pretty darn important. It’s just that my body often needs help, and I feel guilty about that. Perhaps, if my husband had help it would be easier. …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write. It isn’t well thought out. It isn’t illustrated. It doesn’t give a good account of what has happened. It’s just me. Telling you a little bit how it is now. In this world of mine. would I change things in my world today. yeah, can’t say I wouldn’t. Do I still love my life….most of it yeah. This vertigo stuff can hit the highway though…..but I will accept it. I have to.

This is just how things are right now. Just right now. they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right? this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this? ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often. I need to keep up with what is happening to me. So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

A time to think of my…Gratitudes.

On October 13, 2014 By WendyIn Chronic Illness9 Comments

There are days when you have a hard time. Days when you can’t think of anything but what is going wrong. It’s on those days that I find it most important to step back and look around me at the things I’m grateful for.

Today is a day I want to really look around and pay attention to what is in front of me, I know I have so much to be grateful for!

I’m grateful I woke up today. What? You think I’m joking? I thought I’d start at the beginning of my day, and I thought what is the first think I’m grateful for today? I’m grateful I’m here. I’m grateful that I’m alive. I’m grateful I can breathe. Oh there is a good one! Last night I had a very difficult time breathing, I coughed and coughed, and had a hard time taking a deep breath. I had used my inhaler and it didn’t seem to do anything. I did a nebulizer treatment, and I could breathe better, but of course I had the shakes for a long time afterward (I really hate that thing, a necessary evil). Then I started coughing again, and well, it was a not so great breathing night. Just one of those nights for me. I did sleep without much coughing, so that is great! We’re working on getting the chronic bronchitis under control, but haven’t gotten there yet. I’m not complaining. Last night was a rougher night than usual, the weather changed….rainy, damp…that makes it worse. Again, not complaining, just stating the facts. I accept it as it is, and I am fine with it. I will be going to a new pulmonologist soon and we will work at getting this more under control. I am very grateful that I can breathe better today.
I’m grateful my husband can walk our new dog every morning, and she is so good about it! When we first talked about getting another dog Stuart said he didn’t want to have to walk it. Then we met Kiki, and knew she was the right dog. I was having hip problems, but thought it was going to be over very soon. The doctors thought it was just a little inflammation, I was scheduled to get a hip injection and they thought that would be the end of it. So when we decided to start fostering Kiki, I had planned to be the major caregiver. Little did we know I would fall the night after my injection causing me to have a herniated disc in my back, and now a month later, I’m still not walking Kiki. I’m still not walking much at all. However, Kiki is the best dog about taking walks. If you are in a hurry, she will go very fast. She isn’t the kind of dog who will just go out and sniff and sniff just for the sake of it. If you go out and walk out to the tree and then walk back toward the house, she will go. No problem. Often, in the mornings she will run Stuart outside, go real fast, and run back in and go back to bed! She says….”Bye Dad! I’m ready to go back to sleep!” He has even said that he likes taking her for walks! I’m a little envious. I’m very grateful they have bonded and the walking issue, never became an issue!
I’m very grateful my doctor thinks my herniated disc will heal with just a little physical therapy. Yep, right now I’m bored out of my mind. I’m so tired of not being able to do anything. I can’t walk far without pain, I keep waking up because of pain, I can’t sit long without pain, well it just hurts. I’m so relieved that the spine specialist thinks that I will heal with very conservative treatment! Yay!! I’ll happy dance when I can!!
I’m grateful I didn’t gain weight while taking steroids. Oh boy, oh boy can we get happy about this one?! The steroids made me go out of my mind, I was climbing the walls and wanted to destroy people, but I didn’t gain weight! I didn’t weigh myself for the past month, it was too hard to try to step on the scales, I finally weighed this past week. I lost 4 pounds! For inquiring minds….that is a total of 44 pounds lost so far!!
I’m grateful I understand I can’t trust my emotions right now because of the steroids. I was actually very proud of myself for my self control and for understanding that it was the steroids that were making me feel so horrible. They are still nagging at me a bit, I have one more dose, but you know it will take a little while before they are out of my system….so I can’t trust my emotions. That is a good thing to keep in mind. It is very difficult for someone who is bipolar to feel this way. I am always very on top of my emotions, very in tuned to how I’m feeling. I have to be. If I start noticing that my feelings are our of sync with how they should be, I need to talk to my doctor. By this I mean, I need to watch out if react to something in an inappropriate way. For instance, the other day, I said to Stuart, “Why don’t you use your damn common sense once in a while?!?” in reaction to him just asking me a simple question. This was VERY inappropiate! I do not talk to him that way, and I couldn’t calm down. I was sitting there suddenly saying….”I don’t act like this any more! I don’t feel like this anymore!” I took some deep breaths, centered myself, and calmed down. Apologized over and over to my dear husband and explained I couldn’t help it and it would probably happen again. I was full of anger I couldn’t control and he was probably going to get the brunt of it. He was a dear sweet love and hugged me and understood. Yes, he did get it a couple of other times, nothing like that time, and we dealt with it very well because we talked about it and how the medication was affecting me. I’m so grateful I have a husband that communicates with me and understands about uncontrollable emotions due to steroids.
I’m grateful for a small place to live. I’m grateful for a place to live that is safe. I’m grateful for a place to live that is peaceful. I’m grateful for our place. I have been a little ungrateful for out little place lately, and just now I realized just how very grateful I am for this place. I really do love this little place in many ways. I love that it is small. I am very grateful I do not have to climb stairs right now. I couldn’t. It is so much easier for me to get around this little place. I have been feeling a bit claustrophobic in here lately, and way too isolated. I know it’s because I just can’t do anything. My mind wants to do something and my body says NO. (yeah I’m working on that) I’m very grateful that of all the places we looked at to rent we found this peaceful little place. It is quiet here, (yes that is so important to a deaf person…haha). There is little traffic on the street. There are more people out walking their dogs in my neighborhood than there their are cars that pass by! I just think that is so cool! Yes, as I write this little piece I’m much more grateful about the place I live.
I’m grateful Kiki loves her new toy so much! Yes it is the little things that bring joy into our lives! Kiki loves her little toy so much! She has forsaken all of her other toys for the one she picked out at the pet store. It is a little beaver…I think. It has a recycled bottle inside so it crunches, and it has a squeaky toy in the tail. She loves this thing so much! She carries it around, and gets so excited. She will chase it, she will play hide and seek with it, she will run and get it and bring it to you just to show it to you…..”Look! LOOK! SEE! my toy!!!!” She takes it to bed with her. She doesn’t play with it in bed, no she just has to have it with her. If I’m in a different room she will go check on me then she will go and get her toy and bring it to the door and show it to me….like she is showing the toy where I am?? Then she will leave. She has so much fun with her toy, and it brings me much joy playing with her with it, and just watching her with this toy! I will never get tired of watching her play!
I’m grateful my husband took me out yesterday for a short trip to the mall and I found a bra that fit – First Try On!!! don’t really need to follow up on that one….but I will! I must say, this is the very first time this has happened, and it is amazing to me. After losing so much weight I went in and completely guessed my size! I was not up to trying on a lot, this bra was on mega sale and I thought, OK, I’ll try it. I had on an old bra that was too small, so I adjusted the size from it….and Wow! I’m still amazed that it fit, and it just looks and feels so great. No gaps, no pinching, no pulling…..I’m a happy woman! It was also on such a mega sale I won’t feel bad if when I lose more weight and soon need a different size! One thing that is a little different about me losing weight….I have bigger boobs. I’ve always liked my breast. I have felt they were just the right size, not too big, not too small…just right. When I gain weight, they have always stayed pretty much the same. They didn’t get really big with me. (a lot of women gain a lot there, I didn’t.) Yes I’m silly, but just thinking about it, if things keep going as they are I’m going to be a bit bigger. Right now I’m a cup size bigger than I normally am at this band size. Stuart likes it. hahaha However, I can’t imagine him not liking anything about my body….he is a bit biased. and I’m very grateful for that!
oh there is so much to be grateful for!! I’m feeling so much better than I was when I started this post! I’m grateful I have so much to be grateful for...here’s a few more….
I’m grateful I got to tell my sister how I was feeling about some things. It doesn’t matter if things don’t change, I’m just so grateful that we talked and I know she knows some things now that were stuck in my head and I needed to let it out. It’s hard to put some things in the past if you don’t know if other people have put it there, or heck, if they even know about it. Yeah, try to wrap your head around that one. I just feel better about things. I’m grateful for that.
I’m grateful that I’m emotional. (no one needs to understand that one. It just really used to bother me, now, I’m glad. I like having deep feelings. It may hurt a lot sometimes, but it is also pretty darn great other times. Being “emotional” is not a bad thing.)
I’m grateful I found this meditation on forgiveness….I needed it…. Forgiveness Meditation (this is just a written page, not a link to a guided meditation, read if you want. I liked it a lot.)
I’m grateful I have some friends I can reach out to, even if I don’t have any I can see in person.
I’m grateful I have clean water. (I really don’t like the water from our tap here, we have started using bottled water, and I’m so grateful for it. It really makes me think a lot about people who can’t get clean water at all. I’m so very grateful that not only do I have running water in my home, but I am able to get wonderfully clean water whenever I want it.
I’m grateful I have access to fresh food. Something else I have thought about a lot lately. I have talked a lot about the change in my diet, how I’ve lost so much weight and how much healthier I am because of my new eating habits. I haven’t mentioned some of the other things I’ve noticed that I can only attribute to my diet change. My hair is thicker. My fingernails smoother and less brittle. My skin is clearer. I can tell you I haven’t changed my hair products, nor have I done anything different to my nails, so I can only attribute those changes to my diet. I did change my facial wash, but I will admit I don’t use it every day. I am a self proclaimed foodie. I love good food. I love fresh food. I’m grateful that even though we have had very lean times over the past couple of years, we have always managed to eat as fresh as possible. We have cut corners every where we could so we could spend a little more on our groceries. We do still spend wisely in the grocery store, but let’s face it, fresh fruits, veggies, and high quality meats are expensive. For some people it is a matter of choice, but sometimes it is a matter of not being able to afford food…period. Can you imagine if you simply could not afford to buy groceries at all? There are so many people who go to bed hungry every night. So many people who are malnourished. My gratefulness about food is huge. I’m so grateful that I now have the knowledge to be able to nourish my body in a healthy way, and am able to provide it with all the food that it needs.
I’m grateful I have this blog to write about things….and I’m very grateful that there are some people out there that read it. Yep….this is what I needed today.

I really do appreciate life so much!

I love my life!

Do I have challenging days? Yes!

Will I feel bad on days again? Yes!

Do I accept my life the way it is? Yes!

Do I wish it were different? Sometimes….I’m working on a NO for that answer, but I think “Sometimes” is pretty good. I still love my life, just as it is, even if nothing changes, even if it gets worse, I still love my life!!

That’s pretty important I think. I love my life, all the good parts, all the bad parts, all the fun parts, all the hard parts….I love my life!

I’m a Spinning Hipster

On September 8, 2014 By WendyIn Chronic Illness, Hip pain, Meniere's Disease6 Comments

It is a challenge to always be aware of what is happening right now, without wishing it were different. However, that is the basis of mindfulness, and it does help when you live a life full of chronic illness and pain. Sometimes I just can’t do it, sometimes I wish things were different. It’s not that bad right now. Yes, I’ve wished it were different at times, but I haven’t been too worried about it. I know things will change, and I one very big thing I have learned, even when I can’t be mindful enough to be aware of what is happening in my life right now, without wishing it were different, I can be non-judgmental of myself. That’s a big thing for me.

Traveling back and forth between Charlotte and Durham over and over again during this move has worn my body a little bit. My hip left started to protest a little over a month ago. We came back from Durham and I wasn’t walking very well. I rested it and after about a week and a half I it was acting more normal. Then we went back to Durham. When we got back, I was much worse. This time it didn’t settle down.

hip x-ray courtesy of http://www.orthop.washington.edu — hip x-ray
courtesy of http://www.orthop.washington.edu

I ended up going to the orthopedic urgent care on the evening of August 29th, yes they have a special urgent care here just for hip and knee orthopedic, isn’t that amazing? I was shocked at how wonderful this place was. I didn’t have to wait long. They didn’t rush me in and out, the doctor took his time with me, they all worked hard to make sure I understood what was being said after they learned I was hearing challenged. (nice way of saying, one of my Cochlear Implants was broken so I was really not hearing much of anything!) The x-rays showed that everything looks good. He thinks the labrum is catching, but really we aren’t exactly sure. I’ve had trouble with the other hip too. Could just be in my genes. My father has trouble with his hips (well he had trouble, now he has new hips) and my aunt has trouble with her hips. It could be arthritis starting, just not to the point of showing up on an x-ray yet, or I’m just wearing out. The doctor wanted to give me steroids to get the inflammation to go down. He said when inflammation starts it is very hard to get it to stop, it just kind of get out of control. I explained to him that I am very afraid to take steroids because they often cause me to have severe vertigo attacks. He respected that and said he didn’t blame me. He suggested getting a shot in the joint. I agreed. Then we realized the holiday was coming up. I was in a lot of pain and told him to write the prescription for a very low dose of steroids and I would take them. We filled them on the way home and then I chickened out. I couldn’t do it. I’d rather hurt, a lot.

I had a follow-up appointment scheduled for Tuesday afternoon. I was awakened on Tuesday morning by a Meniere’s attack. Full blown vertigo! There is no way for me to prepare for that, couldn’t center myself and get calm, all I could do was grab the trash can! I was totally unprepared! Stuart had just left for work. My phone was across the room being charged, this is strange, I normally charge it on my night stand, for some reason I plugged up across the room. My emergency kit was in the living room. I was really unprepared. I started to panic. Then I stopped. I took a deep breath and said, “NO”. “Calm Down” “Feel the Night Stand under my hand, it is not moving. I’m not moving. Look at the bottle on the night stand. It is not moving. Focus. Calm Down. You are safe.” It was very hard because I was SO HOT! I had no way to cool down. That was making me very sick. I did get in a Valium and Phenergan. I was calming down but the heat was still making me sick. I started to control the spinning but was still throwing up because of the heat. I was able to lunge for the phone and text Stuart…”vertigo help” all of this had happened so fast. He had just parked at work and gotten out of the car, he turned around and got back in the car and came home. (I found out it did take him longer to get to work that day because he stopped to get gas, so it didn’t happen as fast as I thought.) He came home and got me an ice pack and cooled me down. Then I could really make peace with everything. I did a good job handling things. I will say, I did want things to be different. I’m not that great at that part of mindfulness all the time yet. In that instance, if nothing else, I wanted me to be more prepared. I haven’t had anything like that happen in so long, I got lazy. I can accept the fact it happened. It is the nature of the beast. It happens. I was very upset that I was not prepared.

stop worrying — image at http://sharifahnorhamidah.blogspot.com

Then I started to worry. What if I am on my way to feeling bad again. I had a reprieve of a little over 4 months before, and it all feel apart. What if….. What if…. My mind grabbed a hold of that and it kept going back to it. I would think I needed to stop thinking about the future I can’t control it, but I wasn’t really able to stop my mind from going there. Finally I was able to let it go. No I don’t want to end up getting that sick again, but if I do, it’s not the end of the world. I will make the most of it. I learned a lot, heck, if it happens again, I think I could handle it a lot better this time. I can’t control what happens. I’m not going to worry about it. I’m not going to think about it. I’m staying right here in the now. I’m living in this day, and I like it.

My appointment with the hip orthopedist was rescheduled for September 4th. I still felt a bit hung over from my attack on Tuesday and my hearing sounded a bit off, but I was able to make the appointment, no problem. I saw a different doctor. She was also very nice. The entire office is very understanding about my hearing, and try very hard to remember to look at me when they speak. (I did have both my Cochlear Implants in working order at this time, but it is still always a challenge.) My doctor forgot a couple of times and I gently reminded her that I need for her to look at me, she was so apologetic, you could tell she was trying so very hard. She is just so used to speaking to both people in the room, and also speaking when she takes notes. She was a lovely woman who explained things very well, and gave a thorough exam, that HURT! haha She agreed with everything the doctor said in Urgent Care. I will be getting a shot on the 11th. I will go back to see her about 4 weeks after that. She told me to take notice how I felt when I got the shot, if I felt better immediately, when it started to hurt again, if I felt better later….ect.. This is a good diagnostic tool telling them more about what might be wrong, and we will discuss it more when I see her again.

Right now, my hip hurts, but I’ll be getting a shot soon. I’m feeling happy I’m alive to feel it all, and just be. I’m grateful I handled the attack as well as I did even though I wasn’t prepared. I’m grateful my hubby has a flexible job and was able to come home and work from home that day and watch over me….and take the time needed to take me to the doctor. I’m grateful there is a special urgent care for hip and knee orthopedic needs. I’m grateful I had such great doctors at both of my visits, the urgent care doctor and the doctor at my follow-up visit.

I have much to be grateful for during all of this. I will admit there are a lot of challenges. I am not able to do much without pain, so I can’t do things around the house. Stuart is once again having to do most everything. This is taking its toll on my poor husband. I can see it wearing on him. There is still so much to take care of with the house in Durham. So many things to just do. It doesn’t help to worry about it. We can’t change things by worrying. What has happened, happened. We can make plans for the future, but we can’t get too wrapped up in them.

Something we’ve had to learn because of my illness, don’t fret if something happens to mess your plans all up. Change your plans as the day changes. Go with the flow, it’s much easier to float with the current than to fight up-stream. So when things happen to completely go against your plans, change your plans. I sound like a broken record, but this is one of the hardest things for people to understand. Not just chronically ill people, everyone can learn from this. People get really stressed out when things don’t go as planned. This goes for what we expect of others too. Perhaps we should talk more about this at another time….this post is getting a bit long.

Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow.

Let reality be reality. Let things flow naturally forward in whatever way they like. ~Lao-Tzu

A Tiny Bit of Independence Restored.

On March 19, 2014 By WendyIn Advocate, Chronic Illness, Deaf9 Comments

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.

fairy doctor — Doctor Fairy: fairiesbynuria
(Please click on image to be taken to fairiesbynuria’s etsy page,
she makes the cutest fairies for all occassions)

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.

Why don’t they listen?

On January 13, 2014 By WendyIn Chronic Illness, Deaf, Health Care5 Comments

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!

image from www.someecards.com — image from http://www.someecards.com

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.

Picnic with Ants

Tag: Deaf

What’s it like to have a Cochlear Implant?

My Visit to John Hopkins

Don’t Let My Situation with Meniere’s Disease Depress You!!

It’s just so hard sometimes…

I did it Alone. Spinning another day…

Not the post I planned….

A time to think of my…Gratitudes.

I’m a Spinning Hipster

A Tiny Bit of Independence Restored.

Why don’t they listen?

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