Tag: cochlear implant

What to say, when you don’t feel like talking?

On By WendyIn Chronic Illness13 Comments
Depression by ninykinin via DeviantArt.com

I’m sorry to my followers, my friends, that I have not been around much.  I am a bit overwhelmed by so much that has been going on that I haven’t told you about, and I’ve been sucked into a depressive state.  I keep trying to pull out of it, I even have a new medication, but I’m still just blah.  I wake up in the morning, and often feel awful for the first hour or two, it takes me a while to feel like a real person, then when I actually feel alright, I think what reason do I have to get out of bed?

I don’t find pleasure in the things I used to be so passionate about, like art, cooking, blogging….ect.  I do still find pleasure in reading, perhaps it is an escape?  I also still find pleasure with my husband, just being next to him makes me feel better.

I will be seeing my psych. tomorrow, I’ll discuss this with him, and we’ll see if I should increase the antidepressant I’m on, or try something else.   I’m sure he can help pull me out of this.

If you have been reading my blog for a while, you know that I’m normally very positive.  This turn of emotions has hit me like a wall, I don’t feel like myself.  I need to get my positive outlook back.

The ironic thing about this, I’m actually much better.  I have the weird feelings when I first wake up, but I think that’s because I’ve been horizontal for so long that my cerebrospinal fluid raises a bit, and I have to sit up for a while, and take my medicine before I feel better.

I’m still having migraines, but they aren’t as intense.  I’m still having Migraine Associated Vertigo (MAV), but not as often, and when I do it doesn’t last as long.  Maybe I’m just getting the medication in faster, all I know is it’s better.  I’m still having chronic migraines though, yes they are better, but they still knock me out of commission for a while, so my doctor is starting a new treatment plan.  We want to get it where I’m having much fewer migraines, not just less intense.

No Meniere’s vertigo!

My surgery has FINALLY been scheduled!  July 19th, I will receive my bionic ear!  (my implant is from Advanced Bionics…so I can literally say I will have a bionic ear!)  Two weeks after surgery they will turn on the cochlear implant.  (I wrote a post telling all about the processors I chose, but that’s the one WordPress deleted half of, so I need to finish it again…I will try to do that soon, so you can see what will be hooked to the side of my head.  I’m sure you are all eager to see that!  : )  Just wait until you see it actually on my head!

Other things that have been happening:  We got new carpet.  We replaced our worn out couch.  We had our mattress replaced under warranty…it wouldn’t bounce back.   So the house is full of chemical smells, and I’m so sick!  I keep trying to stay in rooms with less chemical smells, but I’m still coughing so much my throat is sore, my head hurts, I’m so tired all the time….ect.  I’ll be so happy when I can breathe in my own house again!

Tell me is it normal to feel down when you start feeling better?  Yes, I’m feeling better but not to the point that I can do everything I want.  Since I feel better, I’ve begun to resent that I can’t drive, I can’t have that independence.  I hate that Stuart has to be with me for me to leave the house.  I know with the uncertainty of vertigo it’s even dangerous for me to walk around the block by my self.  I resent that I have to be careful of all the food that I eat.  We took a little trip this weekend, and it was so very hard to find food that I could eat.  I felt horrible, every time we wanted to eat it was such an ordeal.  It’s not so bad locally, we know places that are safe, but I didn’t think about not being able to find safe food on the road.   We tried so hard to make sure everything I ate was safe for me, but still I got sick.  On the way home we had to stop numerous times so I could run to the bathroom.  I was so embarrassed to have that happen in a public restroom.  eww.

I used to find it a challenge and a pleasure to cook even with my restrictions.  I thought it was interesting to figure out how to change a recipe so I could eat it.  Now I resent that I can’t eat some things.  That I can’t cook whatever I want.  I don’t like this feeling.

Oh, I almost forgot, I had a birthday.  July 2nd!  My husband is a dear man, he celebrated my birthday for 4 days, and I’m getting my main present today!  So, still celebrating… he’s done something sweet for me every day since Friday!  He really made up for the one time he forgot my birthday!  haha  Funny thing, I thought I was turning 50 this year.  Stuart and I were walking along one day last month and mentioned my birthday, I said that this one was a big one, he asked why 49 was big for me, I said, “No, I’ll be 50!”  He looked at me, and said “No Wendy you will just be 49”.  I was sure I was going to be 50!  He said, “What year is it?”  I said, 2012….Ooooh!  I guess I’ll be 50 next year.”  How silly was that?  Here I’d been telling people for months that I was turning 50 this year!  hahaha

Well, I think that’s all I can purge out of myself at the moment.

I will try my best to blog more often, I really want to become passionate about it again.  I’ve missed my friends.

Pet Peeves

On By WendyIn Chronic Illness11 Comments
What annoys you??
image courtesy of dusty29100 at deviantART.com

We all have them…those little things that really annoy us.  I’ve noticed lately that I have more pet peeves than I realized.

I really annoys me when:

  • I write a whole post then I hit “Save” or “Publish” or “Preview”, and suddenly I’m told my login expired and I need to login again….of course, at least half of my post disappeared!  Yes this just happened, and I don’t have the brain power to do it again right now.  Ugh!  I how annoying!
  • I go to a party with many people in attendance, and the only towels in the bathroom are those little finger-tip towels.  Ick!  They are dripping wet within half an hour!  Why do people do that?
  • I go to a party and they have the rooms decorated for the party, but the bathroom is dirty.  again…Ick!  Of course, they also have no towel at all in the bathroom!
  • I email a company and don’t get a reply, or I email a company and explain I’m emailing because I’m hearing impaired and can’t talk on the phone, then they email me back that I need to call.  That’s just rude.
  • Insurance companies give you the run around….for weeks and weeks.
  • I am asked at the doctors before a procedure if there is any way I could be pregnant and I answer “no”, but they make me take a pregnancy test anyway…Why Ask?  Just tell me to pee in a cup!
  • people won’t admit to something they did wrong.  (for example, we had new carpet installed last weekend, in our bedroom there are two gouges in the wall.  It was covered by a paint that does not match our paint, it’s close, but it doesn’t match.  They didn’t even fill in the holes, just painted over them.  Now they say they didn’t do it, they said don’t have paint.  I KNOW it wasn’t there before, it’s right by the door, I see it every time I walk out of the room!)  Why do people not take pride in their work?  Or show respect to other people….and that brings me to another pet peeve….
  • people are rude!  So many people are rude and do not respect others, or their environment.  Think about the car that cuts you off and speeds away, only to get stopped at the same stop light you do.  The person who throws trash out on the road, or in a parking lot.  The person who leaves a grocery cart in a parking place.  People who are rude to those who provide customer service to them….like waitresses, cashiers…ect.   And on that note….
  • people do not get off the phone when they are checking out of a store, or at the bank…ect.  How rude is that?
  • people who talk on the phone, or text when driving.  Texting is simply stupid….what on earth are they thinking?  But…how many times have you been aggravated by how someone is driving, only to look over and see they are on the phone?  It’s illegal in our state, but people do it constantly.  (and I’m not talking about hands free)
  • I have to wait way past my appointment time…anywhere.  Why is my time considered less valuable than the person I’ve come to see?   And I really hate it when they are very late, and don’t apologize, or thank me for waiting…ect.
  • people who are very educated use bad grammar.  There’s a difference between someone who doesn’t know any better, and those who just don’t care.  (there is one person I know who should know better, but she always says “weren’t” when she should say “wasn’t”…it makes my skin crawl.)
  • people who write everywhere as if they were texting!  I have a friend on Facebook who writes her status updates like that…it drives me crazy, and I will admit I often do not understand what she is saying.
  • Things I’m looking forward to are delayed over and over.  (I got a call from my surgeon’s office today telling me we have to reschedule my surgery from July 11th to the 19th or after!  We just set up the surgery yesterday, now another delay.  I’m beginning to wonder if I’m meant to get this cochlear implant.  One delay after another.  This should have happened 3-4 weeks ago.  I’m so depressed about all of this.  It has been a constant stressor for almost 2 months!)  Yes! I am annoyed!  Heck, I’m downright pissed!

See what I mean? I have a much larger list of pet peeves than I ever thought I would.  Things used to not get to me so much.  But please note, I don’t hate the people who do these things, I simply hate some of the things they do.

I must practice showing understanding, and compassion….but I’m sure some of these things will always annoy me.

What is your Pet Peeves?  Are some of yours the same as mine?

Wonky, Sloshy Head

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease11 Comments
Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Hard to Get Started Again…

On By WendyIn Chronic Illness16 Comments

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Sleeping

On By WendyIn Chronic Illness9 Comments

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

What? You’re Breaking Up…

On By WendyIn Chronic Illness9 Comments

Let’s talk a little about hearing.

What?  Okay, let’s not actually “talk”, let’s type a bit shall we.  Ah, that’s better, I can understand this much better.

Recently I saw the Audiologist and had my hearing aid adjusted.  By recently, I mean 2 -3 weeks ago.  I was amazed.  I was hearing things I didn’t know I’d been missing.  For days I kept asking Stuart, “What’s that noise?”  I do believe I was driving him crazy.  He kept having to think, what noise? then he’d realize, oh, she heard the truck outside, or the plane over head…I hadn’t been hearing these things.

Then my hearing started to drop.  Just like my left ear did this past summer.  It started sounding like a busted speaker.  Things didn’t just get quieter like it originally did when I lost the majority of the hearing in my right ear.  In my right ear, after each Meniere’s attack I simply didn’t get all my hearing back, things got duller, softer.  This is different. Things sound tinny.  Broken.  Today it’s a bit better, but it’s still there.  For some reason, my left ear’s nerve was damaged.  Dr. Kaylie said it’s not that uncommon with Meniere’s patients.  He said the way I was losing my hearing in my right is more right is more common, but it’s not completely uncommon for it to happen like the left.  My worry is, the left ear’s hearing dropped so suddenly.  It fluctuated a bit for 3 months, then it didn’t come back.

I just tried to watch something on Netflix.  I didn’t realize it didn’t have subtitles, but since I had my hearing aid adjusted if I listened with my iCom (it puts the sound right in my hearing aid) I’ve been able to watch some things without subtitles.  This show started, I could not hear anything.  I checked the volume on my computer, it was all the way up on the computer and on the site.  I could only hear tiny little squeaks.  I would not have thought it was anything if I wasn’t trying to hear something.

It bother’s me so much that Netflix has so very many movies and shows that are not subtitled!!!  It’s ridiculous.  They have a list of some they do have (it is not inclusive) and there is no way to sort it by genre or anything worth while.  You can sort it by title, year, rating, and how many stars it got.  Big deal.  I’m looking for a Sci Fi movie…help me out here.  Geez. We usually have to order discs because more discs have subtitles.  Ummmm, if the discs have subtitles why aren’t they available on streaming?  Really.  Do you realize the market you are missing??  OK.  Off Soap Box.

My worry about the hearing loss.

image from Wikipedia

I know I will need a cochlear implant.  I really don’t want to be completely deaf this late in life.  But will they go ahead and do it with everything else going on?  Or will they need to get this all settled first?  What if I completely lose my hearing in just a few short months?  Or less?  (I know I’m looking on the dark side, I’m just looking at the worst case scenario, and remember I went through this last year.  And right now I can barely hear!)  So, tomorrow we are going to call the audiologist and make an appointment for a hearing test.  So I can be armed when I talk to Dr. Kaylie.  So I can ask him, if I need a cochlear implant soon, will we need to wait until the intracranial hypertension is under control first?  Heck, couldn’t another hole in my head be a good thing?  cause a little leak in there doc, just a slow leak…yeah….then I won’t need the shunt.  hahaha

Does anyone out there run a fever at night?  Or know why you might?  I had all the test run recently…autoimmune, inflammatory…ect.  all perfect.  Even my fatty liver is not fatty.  It has fat on it, but the liver itself is not fatty.  Great news.  No autoimmune markers….so yes, I am allergic to wheat, and intolerant to gluten, but I do not have Celiac.  *sticking my tongue out at a certain doctor*  Why am I swollen every morning?  I had that answered by one of you lovely friends.  Bed bound people retain a lot of water.  So I’m trying hard to move more, but not move so much that my pressure gets all raised and I get a spiked headache.  I’ve also cut way back on the salt.

Anyone else out there have hearing troubles?  I know you are out there….do you think you will ever have to get a cochlear implant?