Tag: hearing loss

Daily Schedule #HAWMC Day 25

On By WendyIn Chronic Illness2 Comments

Today I’m using a prompt from the Extra prompts they sent us.

Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

photo courtesy of istockphoto.com

Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments.  My days change from one to the next, a lot.  If I’m feeling a bit better, I do more….

Here’s a recent weekend day.

After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.

Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.

2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.

4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.

5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.

9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband.  Take my nightly medications, and try to sleep.

This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)

I Keep Writing Because…. #HAWMC Day 24

On By WendyIn Chronic Illness7 Comments

Bonus Prompt: I keep writing because… Start your post with this sentence and, as the title says, keep writing. Free write for 15 minutes without stopping and see where it takes you.

(today’s original prompt was to post a Health Mascot.  My dog Sandy is my mascot, but I couldn’t right about that today.  She died April 18th, one day I’ll write about what a brave, and wonderful dog she was, how many health issues she had and over came, how she was as the vet often called her, “a Wonder Dog”.  But not today.)

photo from Flicker Sharing by earthunderheaven (to find more of their work click on the photo.)

I keep writing because…recently I keep writing because I am determined to finish this challenge.

Actually, I’ve begun to wonder, why I keep writing.  I know why I started, I know I have made some good contacts, friends, and my heart has been here. This blog has really helped me through some tough times when I felt no one else was listening.  I’d write, just to write, and I found there were others out there, others who felt like I did, others who needed to have that contact too.  Now, I’m hurting so much.  I’ve had so much loss this past year.  I felt I dealt with each one, I was strong, and positive.  I was told I was the most positive person someone knew.  I was proud of myself and how I was looking at life.

Then another diagnosis came earlier this year, and it has been hard to deal with.  I couldn’t be that positive about it.  I’m still a bit in shock from it, and simply not sure how to look on things positively.  I’m larger than I’ve ever been, and the doctors just seem to be ignoring it, yet they tell me my triglycerides are high, and I’m borderline high blood pressure….ect….but they all say, don’t worry about the weight right now, you have to focus on this.  I’m afraid I’m on my way to diabetes.  I read all these books on nutrition, cut out soda, all High Fructose Corn Syrup, snack on nuts, cheese, fruit, veggies, eat at home more, cut out gluten….all these will help you lose weight…but I do all of that.  so why can’t I lose weight?  I need help, I’ve been to a nutritionist, no help.  Most don’t even know what fructose intolerance is….I know more than most of the “professionals”.  I’m grieving for the loss of what I used to be, what I used to look like.  I now have no energy, can’t exercise because it will raise my CSF pressure, I can’t walk for long because of my hips, I can’t even enjoy sex.

I’m grieving because I lost everything that I gained early last year.  I can’t drive again…but I have a cute little car.  I can’t be a foster parent, even though we went through all the classes had all the references…everything…but no, I can’t because it wouldn’t be fair with my health issues to bring a child into this.  And frankly I don’t think I’d pass the physical now.

and worst of all I lost my best friend, my little baby dog.  A HUGE part of me died with her.  I have to find a way to make that part live again.  To put the pieces of my life back together, even if some of the pieces are missing

Why do I write? Because I need to.

But I also need to take a break.

I may write sporadically for a while to let you know what is going on, but I need to take a break from the internet.  I won’t be reading other people’s blogs as much or commenting as much.  I need to take some time to focus on me.  I may write about it, I may not.  right now I’m simply trying to figure out how to get past all the grief of things I’ve lost this year, or how to grieve without losing myself.  I need to focus more on the spiritual side of me.  I need to make some huge decisions.  My husband and I need to grieve over our Sandy together, and figure out how we will carry on with our family now that such a huge part of it is gone.  We may end up moving.  As I said a lot of decisions….and a lot of needs.

But yes I will write again.  Because I must.

End 15 minutes…plus a little to put in the photo.  : )

Needing Strength – Writer’s Choice- #HAWMC 23

On By WendyIn Chronic Illness12 Comments

Today’s Prompt: Health Activist Choice Day 2! Write about whatever you like.

Strength by Carnegriff at deviantart.com

Needing Strength


The losses, so many losses

my mind struggles to comprehend.

The year has been a blur

I cannot keep up with the grief.

My life has been about strength,

never staying down for long.

Now I am broken, the pieces are scattered,

missing pieces never to be found.

The light in my soul is barely a flicker,

the flame will not light the way.

Until reached, no one knows what their “breaking point’ is,

now I know mine.

I can lose many parts of me,

always finding the strength to change and carry on.

Add the loss of a love so dear,

and I cannot find the strength.

If not for the love of another,

my life would have no meaning.

Grief, anger, love, tears, memories…

all things we share, with each loss.

We lean on each other,

each needing the strength.

The strength to live with,

all the losses.

Don’t Forget!! #HAWMC Day 22

On By WendyIn Chronic Illness5 Comments

Today’s Prompt:   The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?

Instead of creating a reminder on list on-line, I posted notes through-out my house.  Things we need to remember.

How many times have I forgotten to take my medication? Too many! Now I keep them all sorted by day and time to take, and have them where I won't miss them. Must remember to take my meds!
2 Things I have to remember before I can take a shower.
1 - Take my hearing aid out. Yes I have gotten in the shower and started to wet my hair and realized...Oh NO! I have my hearing aid in! Luckily no damage done, but this I must remember!
2. Because of the vertigo and disequilibrium, I cannot take a shower without someone near to hear me if I need help. I've fallen a few times, or ended up sitting on the shower floor just trembling in fear. I need to swallow my pride and ask my husband for help.
My hubby needs noise to sleep, so he leaves the bathroom fan on at night. This doesn't bother me because I take my hearing aid out. However, in the morning the first sound I want to hear when I put my hearing aid in is not a wind tunnel!!!! Since my hearing is distorted, the fan doesn't just sound like a little fan, it sounds like I'm in a huge wind storm. So honey, please remember to turn the fan off.

The 2 notes are on our front door, things we don't want to forger when going outside.
1 - I have an emergency kit made up in case I have an attack when I am out. This item we should never leave home without. Also I need to drink a lot of water with the medication I'm on, and I also need to have water close in case I have to take emergency pills. A Must that we Cannot Forget when leaving the house!
2 - I'm often spent by the evening, so Hubby needs to water the plant in the front. We have a small area with herbs, and some flowers. He often forgets to water. This has made for an unhappy wife. So Watering the Plants out front...Important not to forget!
Very Important, Every Day, a note to myself "Remember You are Loved!"

Wendy just write…. #HAWMC Day 12

On By WendyIn Chronic Illness2 Comments

Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!

(written April 5th)

image courtesy of http://www.thechicagobridge.org/

“Wendy” just write, don’t stop, don’t edit. Post!

Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.

Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer.  What can I offer.  I can’t even hear them to talk to them.  I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests?  I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!

This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!

I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!

I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.!  I was so busy….I didn’t think it would end…

After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.

I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece.  But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.

Now I’m falling apart….and I’m angry at myself about it!!!?????

I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad.  I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me!  I’m angry I can’t lose weight….I’m MAD AS HELL!

I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that.  However, I know me, and I will. I’ll get it together, and get myself another lease on life.  Life is good.

I have such a good husband. It can’t be all bad. I must think of the good days.

My Sounds of Silence – #HAWMC Day 11

On By WendyIn Chronic Illness18 Comments

Today’s prompt, Theme song. Imagine your health focus or blog is getting its own theme song.
What would the lyrics be? What type of music would it be played to?

I happen to be losing my hearing due to Meniere’s Disease.  So music is very hard for me.  I can’t really hear it even with my hearing aid, sounds very tinny.  However, I have tinnitus all the time.  At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day.  Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out.  That day, I read this prompt.  I thought, I couldn’t have a song.  Then I thought, but even when I’m deaf I will hear sounds all the time.  NO, they won’t be sounds I want to hear, but I will hear sounds.

I talked with a friend of mine, Vincent Morrison,  who is a sound engineer.  He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT.  It varies constantly.  But these sounds always seem to be around.  We did put in some of the startling sounds that just come out of no where that scare me.  We didn’t make it as loud as it can be, I did want people to be able to listen to it.  I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?

So on a better hearing day, my dear friend came over and he tried his best.  I must admit I’m not the best person at describing sounds.  I am so touched to have this recorded.  Trying so long and so hard to explain just a little of what I hear has been so hard….this is my song.

“My Songs of Silence” – sound recording by Vincent Morrison

Artwork by Wendy Holcombe – “Fractured Ear”

Writer’s Choice – #HACMC – Day 7 I Heard a Bee Buzz.

On By WendyIn Chronic Illness8 Comments

With Meniere’s I have fluctuation hearing loss, with eventual permanent hearing loss.

If you are a regular reader you know my situation, if not I’ll fill you in.

Right now, my left ear has 0% word recognition and cannot be helped with a hearing aid, my right aid has about 80% word recognition with the help of a hearing aid.  However, the hearing fluctuates.  My hearing fluctuates more with weather changes, and  when I have a Meniere’s attack.  (to learn more about Meniere’s please see the page above).

One day a few weeks ago I woke up and could barely hear.  Every sound sounded like it was coming through a busted speaker.  The same went on for 3 days.  I admit this had me concerned.  When I lost the hearing in my left ear, the majority was lost in just 3 short months.  The loss started in this fashion.  Sounding like a busted speaker, having a tinny sound.  Normally, in my right ear when the hearing fluctuated, it simply dropped, then would return, sometimes not quite all the way, but when it dropped, it was just a bit softer, not this tinny sound.  So I was nervous.  And I realize, this could still be a sign of potential nerve damage.

However, in about 3 or 4 days, I had a vertigo attack.  Classic sign of a Meniere’s attack.  Fluctuating hearing, then a vertigo attack, ending in complete exhaustion.  When I woke the next day.  I could hear again!  I was so thrilled.  I had a horrible headache, but I could hear.  Who knows how long this hearing may last.  I decided to do something I rarely do, I took much medication to get my headache under control, and went outside hoping to hear some birds.  Sadly I didn’t hear any birds.  I was not the right time of the day.  But being outside was so nice.  I decided to sit on the back porch and enjoy the beautiful spring late afternoon. Soon I was joined by a friend.

Photo courtesy of mr.brown thumb
click photo to be taken to his blog.

A huge bumble bee decided I would make a good friend.  I was out on the back porch for at leash half an hour possibly more, this lovely bumble bee kept me company the entire time.  He would come closer, then go a little bit away.  He faced me, then raced away and buzzed right back.  I talked to him and told him how beautiful he was and how I was out there hoping to hear things I may not hear much longer.  As if he could hear me, he came up right beside my head, I could not only HEAR this beautiful Bumble Bee BUZZ, I felt it!!  He then came around in front of me and looked at me.  I know, this was just by chance, and perhaps because I had on a bright orange shirt.  However, no matter how long I live, and no matter if I lose all of my hearing, I will never forget the day I heard a bee buzz.

Health Haiku – #HAWMC Day 6

On By WendyIn Chronic Illness5 Comments

“Quick Send Money Now!”

Yes, I have brain disorder,

But, I’m not Stupid!

image from seemehearme.biz

Cannot Hear the Voice

Startled by the man behind

He assumes I’m rude

image from http://juick.com/ellma/1346507

Living in Fun House

Is a scary place to live

Not knowing what’s real

The previous Haiku’s all represent health issues I deal with.  The first, a little joke about having a brain disorder, Intracranial Hypertension.  The second, a challenge about losing my hearing late in life.  Of course, anyone who is hearing impaired may have the same struggle, I do not know.  And lastly. this haiku talks a bit about living with both Intracranial Hypertension, and Meniere’s. Each cause me to have vertigo and other visual disturbances.

I hope you have enjoyed.

I used to be….. WHBC Day 1

On By WendyIn Chronic Illness8 Comments

This is the first post in WEGO’s Health Bloggers Post every day for a Month Challenge.

This is from one of the Extra Prompts they sent out. A Poem…

I used to be…..but I’m not any more.

I used to be an artist who painted large paintings, but I not any more.

I used to be a hearing person, but I’m not any more.

I used to be in less pain, but I’m not any more.

I used to be steady on my feet, but I’m not any more

I used to be active and social, but I’m not any more.

I used to be a thinner, but I’m not any more.

I used to be less understanding, but I’m not any more.

I used to be unaware, but I’m not any more.

I used to be less loving of myself, but I’m not any more.

I used to be full of other expectations, but I’m not any more.

I used to be less accepting, but I’m not any more.

I used to be alone, but I’m not any more.

I used to be sad about losing my old life, but I’m not any more.

There are some things I miss about what I used to be, but I like myself more now.  I’ve learned so much about me.  I’ve learned so much about life.

My illnesses may have caused some things to not be as I expected them to be, so why not simply change those expectations…or get rid of them.  Live day-to-day.  Moment to moment.  Soon you will look back and all those happy moments, will become happy days and the happy days will have added up to a happy lifetime.

Every day you possibly can, do something fun, be happy!!

I used to sad about being sick, but I’m not any more.   (well, most of the time.)

Live Happy.

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?