Walk4Hearing

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How I hear. Bilateral cochlear implants. Cool Huh?

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

Did you know that approximately 48 million people in the United States have a hearing loss? The goal of the Walk4Hearing is to increase awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss.

This is my first year participating in the Walk4Hearing and I’m excited and nervous. I’m excited to be surrounded by people who live with hearing loss, like me; our friends and family who support us, audiologists, and advocates…everyone coming together to make a difference. I’m nervous because ….well golly, this is one place I’m not nervous because I can’t hear. That’s pretty amazing. I will be using my walker for balance and safety. I am a little nervous that I might have a vertigo attack, but hubby will be with me, I’ll take all the precautions I can, and if it happens, I’ll deal with it.

I’m pushing myself by participating in this walk, it’s important to me. It’s hard for those with normal hearing to fully comprehend the challenges that one faces with hearing loss. It’s hard to imagine the disorientation that comes from the absence of sound, the concentration required to communicate using both visual and auditory clues, and how people and things can come up from behind you with no warning.

This year, the Walk4Hearing will include a #HearingLossChallenge. Walkers will have the opportunity to wear earplugs during the walk to experience what hearing loss is like first hand. The earplugs will be provided free at the walk sites. Even though, the experience isn’t completely accurate, it will give the wearer a taste of what it’s like to live with hearing loss. Photos and reactions can be shared on social media using the hashtags #HearingLossChallenge and #Walk4Hearing.

I am hoping you can support me in my efforts to raising awareness about hearing loss. Your tax-deductible gift will make a difference in the lives of many!

You can make an online donation from my personal page (click the personal page link here). Any amount, great or small, helps in the fight to make hearing loss an issue of national concern. I greatly appreciate your support and will keep you posted on my progress.

(please visit Sheri Eberts blog Living with Hearing Lossto read about her experience with the Walk4Hearing. I have shamefully used many of her words above, with much gratitude.)

The Hearing Loss Association of America® (HLAA), founded in 1979, opens the world of communication to people with hearing loss through information, education, support and advocacy. In addition to the Walk4Hearing, HLAA publishes the bimonthly Hearing Loss Magazine, holds annual conventions, hosts online learning with the Hearing Loss Support Specialist Training, and more. HLAA has chapters nationwide to support people with hearing loss. The national headquarters is located at 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814. Phone: 301.657.2248.

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The Crud

sick cartoon

The chronically ill get sick, just like everyone else.

I have the crud.  A sniffling, sneezing, aching, coughing, stuffy-head, fever, so I can’t rest cold, and unfortunately NyQuil doen’t help.

When you have Meniere’s disease you can get really sick when there is too much fluid in your head.  I haven’t talked to anyone who has Meniere’s Disease who doesn’t have more symptoms when they have a stuffy head.  No one knows what causes the symptoms of Meniere’s one main theory is that they result from increased pressure of an abnormally large amount of endolymph (fluid) in the inner ear.  Doctor’s usually put us on a low sodium diet and often diuretics to reduce the fluid in our ears.  When anyone has a cold they have a lot of fluid building up in their head; their nose gets all stuffy, and their ears can feel full: put that in a person with Meniere’s and you have one wonky person.  Right now, I’m one of those people.

Nothing I can take can make all that fluid go away. Yes, I can take a few things to help “dry things up”. but I’m sure all of you have had a cold, and you know that no matter what you take you will feel a bit stuffy and all full in the head.

My symptoms are exacerbated.

  • My tinnitus is going crazy, as I’ve said to Stuart: “Really? You Can’t Hear That??” The noise will be so loud at times I could swear my body is vibrating with it.  Other times, the pitch is so high I will suddenly buckle over from the pain.
  • The fullness in my ears feels like there is wet cotton in there and it just keeps absorbing more and more fluid, soon it will be dripping out my ears I’m sure.  (this won’t happen unless I get a bad ear infection, it just feels like it.)
  • I feel much more dizzy and lightheaded than normal.
  • My hearing is just wrong.  I have cochlear implants, I don’t hear like other people. “Cochlear implants (CI’s) 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.” NIH Publication No. 11-4798  You wouldn’t think that I would have the same problems as other people with Meniere’s concerning hearing fluctuation and sound sensitivity, but I do.  It is much worse when I have the cold, but it happens pretty much every evening, I’ll suddenly have my hearing so all funky; I can’t understand Stuart and often things sound so loud that I have to remove my CI’s.  Thankfully, I can take them off and just hear nothing, except the tinnitus that doesn’t go way, but hearing nothing can cause other problems.  When I take off my CI’s and stop hearing anything, I can get dizzier, and feel really confused.  I don’t mean I’m confused because I can’t hear, I have severe brain fog.  If I’m reading, I often can’t comprehend what I just read.  I think this is because I notice the tinnitus so much more and it is bombarding my system.  When I’m not sick, sometimes taking my CI’s off is often a pleasant sensation, to just relax in total quiet (as long as my tinnitus is being good and staying low).  I do this every day when I meditate.
  • My oscillopcia is worse. (Oscillopsica is a visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid and periodic jumping.) It can be incapacitating, luckily mine just causes me to see things weird sometimes.  I often see things as if there is this funky shadow surrounding them, like they are slightly vibrating but I can’t really see the vibration I can only see the after image after.  It’s hard to explain.  On a good day, I don’t have this, or barely have it.  Today, I’ve had to stop writing this post many times because I am having a hard time focusing. (note, not everyone with Meniere’s has oscillopcia)
  • I think everyone has a headache when they have a cold, I don’t know if mine is worse than it used be before I got Meniere’s or not, that was a long time ago.  I know it’s worse than my persistent daily headache.  I’m at a 6 or 7 on the 0 – 10 scale all the time right now.

So far I haven’t had a full blown vertigo attack.  I keep feeling like it’s coming, but it hasn’t.  I’ve been having so many good days recently maybe this cold won’t set it off.  I do constantly feel like I’m on a boat and a bit car sick, but the full rotational vertigo has not come around.

Having a cold and Meniere’s at the same time can be challenging.

If you have Meniere’s and you feel cruddy because you have the crud, you aren’t alone.  Know that it gets better.

If you don’t have Meniere’s, now you know a bit about what people with Meniere’s go through when we have a cold. Some people have more symptoms than I listed, some people have less, but normally people with Meniere’s have their symptoms increase when they have a cold.

Today I have the crud….it just is.

I did it Alone. Spinning another day…

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?

 

Cochlear Implant coming soon….

On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”

On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%.   So it’s pretty obvious I don’t understand a lot of what’s being said.

On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant.   Yes!  I am!!

Advanced Bionics – Harmony- Cochlear Implant.

Next step.  Insurance authorization.  It can take 4-6 weeks.  During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research).  Also, during this time I need to think of any questions I may have, and be prepared to ask them all.  However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now.  I’m sure questions will arise though.

After the insurance approves everything, we just have to schedule the surgery…and it’s go.

About 2 weeks after surgery they will turn the device on.  I’ve been warned I may not hear much at first.  As time goes on my doctor thinks I will hear better and better.  If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI.   They say if you need 2 it’s better to get them close together if possible.

I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.

Right now, I’m excited at the possibility of hearing again…but cautious.   I know hearing through a CI is not the same as hearing normally.  I understand all surgery carries some risk.   So naturally I’m cautious.

But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again.   Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come.  I will be able to hear again.

**In other news about me……   The migraines are so much better!!!  I had another round of steroids, and hopefully they have stopped the cycle.   (There is some doubt right now that I have Intracranical Hypertension.  If I do, it has not escalated, and the medication that should help didn’t help much.  The migraine treatments have helped much more.  My last lumbar puncture did show high CSF, but not very high.  Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)