Tag: hearing loss

Hard to believe it’s Winter.

On By WendyIn Chronic Illness16 Comments
Sorry, Not an actual photo of us, but I'm sure you can feel of the sensation! Whee!

On January 6th, and 7th, we went driving around in my Little Yellow Bug with the top down!  That’s right, the convertible was being used with the TOP DOWN, in JANUARY!  Woot!  Last winter was full of snow, and rain, and ice…and well it was just miserable.  Much colder and much more snow than North Carolina normally has.  However, if there is one thing I’ve learned about living in the South East, weather is anything but normal.

This winter has been mild so far, just a few freezing days, I think I could count them on one hand.  I’m loving it, but it’s odd, even for N.C.  We will often have a warm patch in the winter, but this is like Spring.  The plants are so confused.  My herb garden has new growth, my neighbor’s Irises are coming up, yes, the people and plants alike love this weather, but I’m afraid the plants will suffer greatly when the freezing days arrive again.  It looks like it will be cloudy and/or raining for most of the week.  I bet it turns cold after that.

Pink Wildflower from my garden 2011
I took this photo from our wild flower garden, Fall 2011

I’ve been feeling better than I did before the surgery, some days I feel really good!  Like yesterday, it was a good day.  We had to do a little shopping, so we put the top down, and took the long way through the country to the store.  It was blissful.  We came home and I worked in my studio for an hour..maybe two.  Earlier in the day I threw some things in the Slow Cooker, so I even made dinner!

I’m still having a lot of GI issues.  I can’t figure this fructose thing out I guess.  I finally found a book I’ve been told will help me so very much!  The book is not available in the U.S. (at least not yet.)  It was published in Australia.  I started to give up and order it from Australia, but it would have cost me close to $70 with shipping and tax.  I just couldn’t do it.  Finally  I found the book at a used book store on-line, thanks AbeBooks.  For less than $45.  They only had one copy.  I snapped it up!  So I should get it in a couple of weeks.  I also found a nutritionist who is “well versed” in Fructose Malabsorption and the low FODMAPS diet.  Woo Hoo!  Finally!  I may start seeing her later this month, or early next month.  I want to see what the book says first.  This running to the bathroom 6-10 times a day is old!  I’m really tired of my GI system just refusing to work right.  **TMI time…I had a rush moment to the bathroom today, I’d already been 4 times, this one was very loose and black…yes, black.  Scared the crap out of me (pun intended) .  I thought OMG I’m bleeding internally.  Then I remembered I took Pepto Bismol last night, a bit more than I intended to.  Please, if you  take Pepto, remember it can turn your stools black, and your tongue a funny color too, but I’ve only had that happen once.  So don’t let it scare you….like it seems to always catch me off guard.

Today,  I have Slosh Head.  I feel stuffy, and woozy.  I’m nauseous most of the time lately.  If I’m eating, the nausea is relieved, but shortly after I eat it returns.  ick.  But today is worse.  The tinnitus is screaming, my hearing is down!  (I only heard 3 dings..barely..when I turned my hearing aid on, I normally hear 5…they are different frequencies, so I’m not hearing some of them)  The TV sounds tinny, Stuart sounds muffled.  I just don’t feel good at all today.  I feel like Mr. Meniere’s is battling with Allergy Man and Human Barometer is getting his licks in too!  All inside my head..and tummy!  Just ick.

**GREAT NEWS**  Now the reason I can even consider spending money ….Stuart has been offered a job!

Actually he’s negotiating with TWO companies.  One is telecommuting, one is ‘local’.  Stuart has asked the recruiter for the ‘local’ job, if they would consider allowing him to telecommute and come in perhaps one day a week.  (commuting to and from Raleigh. the next city over, is not fun!  Rush hour is horrible, he’d spend at least 3 hours a day in his car…plus the wear and tear on the car, the extra pollution, and parking…ect…it all ads up.)  They have until Tuesday to make a decision and an offer, he told the other company he would give them a decision on Wednesday.  They both sound like excellent companies, and Stuart enjoyed his interview with both.  So, either way, I think he’ll be happy.

He’s been out of work since Halloween.  I knew it would be hard to find a job over the holidays, and it was.  But he wasn’t idle.  He sent out resumes…lot’s of resumes, had interviews, sold things on eBay, cleaned out his office, is preparing to sell the other car….he’s been a busy man…plus taking care of me wasn’t easy right after my surgery.  I’m actually grateful he wasn’t working for a while there.  Now that the holidays are over, he is in demand!  I know it feels good.  You can tell he’s feeling good about things.

That’s all for now.  I feel like I could just talk and talk.  I think I need to write more than I have been lately, shorter posts more often?  That may be a good idea!

 

I am so ‘effing STUPID!

On By WendyIn Chronic Illness19 Comments
Picture by: http://www.theshamsband.com

OK, today will be day 9 since they cut my ear from top to bottom around the back, and pealed my ear forward (basically, off),  then they took a piece of skull from my head, and opened up the cavity a bit more, so my endolymphatic sac would have more room, and I, hopefully, will have much less vertigo.

That’s the jest of it, and as you can imagine, it takes some time to recover from this.  A bit more than 8 days.

For a week, I had constant vertigo, could not even get out of bed to go to the bathroom.  Then it started to settle down, I started to walk again, I believed I was on the mend (still do, but no thanks to me.)  Yes, two days of improvement, and I think I can conquer the world…or at least the bathtub.

I’ve had a very hard time hearing recently …the past couple of days or so.  I hear about every third word my husband says.  I sound like a parrot who only knows hot to say, “What?”  The TV sounds like it has a broken speaker.  The tinnitus has been going crazy.  I’ve been getting more and more frustrated.  Not only because my hearing seems to be all wonky….in my right ear…my better hearing ear, but also because I am so tired of being dependent on someone else for everything!

Yesterday, I think a lot of the sleepless nights, and being a constant caregiver started to take its toll on my husband.  He was worn out.   I wanted something so badly, but I wasn’t about to ask him for it.   I wanted him to rest, and I was already feeling bad about how I was treating him.  When I get scared and frustrated…well, I sometimes start a fight.  I think I just want to be in control of something.

So I got all hot under the collar, and got up and went in the bathroom.

And took a Bath!  Yes, this is the part where you can say…ARE YOU STUPID, or CRAZY, or just what ever word you want to use to show I was not using the best judgement.  But oh, the water felt so nice, I relaxed so much, I dozed off for just a moment…then Stuart came in to check on me.  (what a guy, I blow up at him for nothing, and he still comes to check on me.)  I thought, perhaps now would be a good time to soap up, rinse off, and get out of the tub while I have him there to watch over and help me.

All went pretty well,  until I started to get up and out of the tub.  Then it all fell apart!  Stuart always wants to help, but I’m not a small girl, he only has about 30 lbs on me.  So I’m always afraid he will hurt himself, or we’ll end up falling together.  Plus…I’m like a kid sometimes…”NO, I can DO IT!  Let me DO IT!”  you understand.

Stuart was close, and trying to help me as much as I’d let him, and I slipped.  My knee hit the bottom of the tub, both ankles bent under me, and I hit my head on either the wall or the side of the tub.  I lost it.  I completely broke down.  Not because I was hurt that much, but because I did something so stupid.  (When I say I completely broke down, I mean sobbing and heaving and not being able to catch my breath because I was so upset.  I started to get dizzy, I started to feel sick….I had to calm down, but I couldn’t.  I knew taking a bath was beyond my limits right now, but I just had to do it!  How many times have I encouraged others not to do what I did tonight?  To take care of yourself, to listen to your body?   If you don’t take care of yourself, you won’t be able to help others…  Did I practice what I preach?  Heck no.

So now I have two twisted ankles, a bruised and slightly twisted knee, and a very small sore spot on my head.  I’ve had my legs elevated and ice on everything.  It looks better…we’ll see how it feels in the morning.  (I really hope I haven’t sent my recovery backward.)  It really doesn’t hurt any longer, I’m hoping it will all just be a bad memory in the morning.

Then to top everything off, I started to put on this oversized t-shirt I like to sleep in, and caught the neckline on my ear!  Yes…that ear!  Hours later and it still hurt.  Luckily, I didn’t rip open the incision.  Sturart says it looks good.  A little red at the bottom, but I think that’s because it’s itching and I keep rubbing spot right under the incision so I won’t scratch it!

So the next time you think about doing something that you know your body really isn’t up to…take it from me…Don’t do it!!

Take care of yourself.

I hope my husband can have a little off time tomorrow or some day very soon.  A friend is coming to visit soon, she wants to give Stuart a little time off….at least a few hours.  (thanks Linda).  I hope he will take it.

What bothers me the most about all of this.  Stuart was already exhausted, then he had to save me, and take a lot of time taking care of me, all because I was just dumb.

 

 

Day 8 – Much better than yesterday!!

On By WendyIn Chronic Illness7 Comments

Today I can get up and go to the bathroom on my own!!!  Well, with a little help, and it wears me out every time…but walking those 10 feet is a great milestone after being stuck in bed for a week.  To go from not being able to lift my head, to being able to walk those 10 steps to the toilet…what joy!

With Stuart’s help, we even brushed my hair today.  I do believe a little family of mice were about to move in, they’d already made big nest!  Thank you to whoever, invented the detangling spray..  Perhaps, Johnson and Johnson – No More Tears detangler…I have an off brand, but still no tears!  It did wonders.  The mice will not want to take up residence now!

The pain is minor to moderate, depending on the time.  The headaches are still there, sometimes much worse than others.  Pain medication or Maxalt seems to be helping with those.  I’m still seeing blood from my ear, but nothing yellow, and it appears my temperature has returned to normal!

I really didn’t expect to have such strides so fast, but I’m thrilled that I was wrong.  I know, I may have some set-backs.  Especially since the feeling in my ear still isn’t completely back.  Let’s hope that the severe vertigo stays away!  (we even got my ear ring back in.  I thought I wouldn’t see that ear ring back in.  When I turned 35 I had my upper ear pierced, sill I know, but it meant a lot to me.  So we took advantage of my ear still being a bit numb and put it back in!)

To close…a drawing I colored last night/today.

Christmas Tree - by w. Holcombe

 

…Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near….  
                                                                                                                                                                           
an excerpt from Dr. Seuss’ “Welcome Christmas Song”
Happy Holidays to all my friends – far and near.

 

 

 

 

 

 

 

 

 

 

 

Suicide because of Tinnitus

On By WendyIn Chronic Illness8 Comments

A friend sent me this story, he has Meniere’s too, it’s very sad, but shows just how severe Tinnitus can be.

Rock Fan Kills Himself After Concert Left Him With Tinnitus

Published November 18, 2011

A British rock music fan stabbed himself to death after a night out watching U.S. band Them Crooked Vultures left him with severe tinnitus, a coroner’s investigation reported.

Robert McIndoe, 52, was unable to sleep for three months after seeing the band – made up of former band members from Led Zeppelin, Foo Fighters and Queens of the Stone Age – at the Brixton Academy, south London.

His psychiatrist, Dr. Helen Stinson, said, “He accepted death as a side-effect of stopping the noise,” the Daily Mirror reported Friday.

The inquest heard he tried to commit suicide by taking an overdose at his home in south London in the same month that he fatally stabbed himself.

McIndoe’s wife Shirley said, “He just wanted not to be suffering.”

Tinnitus is characterized by a constant ringing in the ears, with the noise coming from inside the body rather than an outside source.

Read more: http://www.foxnews.com/health/2011/11/18/rock-fan-kills-himself-after-concert-left-him-with-tinnitus/?intcmp=sem_outloud#ixzz1esCeS0K

image from http://www.dreamstime.com (free stock photos)

I know I’ve had tinnitus so severe that it would have driven me crazy if it had lasted for long periods of time.  Luckily, it usually only last for a day, perhaps two.

I feel so bad for this man.  It must have been so traumatic to have this hit him to this degree all of a sudden.  My tinnitus is usually a low roar, and has only recently raised to the point that I just can’t stand it for short periods of time.

I know so many people who went (or go) to very loud concerts, or shot guns, ect…. with no ear protection.  After the first concert I went to I would always wear ear plugs.  I could still hear the music fine, but I didn’t have the ringing in my ears for days, ect.  Yes, I have tinnitus, because of Meniere’s, not because I didn’t take precautions when I was around loud noises.  People, especially young people, need to understand how they can permanently damage their hearing by loud music…ect.

Be sure that your friends and children know how easy it is to damage their hearing.

May none of us ever have tinnitus so bad we would consider something like this.

Over did it, and Just Saying “No” – my answer to the holidays.

On By WendyIn Chronic Illness, Meniere's Disease7 Comments
REST by W.Holcombe.

**this post was started on Wednesday evening, finished Thursday morning**

Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.

After my beautiful day, I hurt so terribly that night.  Every muscle, and joint ached.  I took a very hot bath with Epsom Salts, like my massage therapist tells me too.  It helped, but then I got all woosey and dizzy when I got out of the tub.  Change in temperatures was too much for my head.  (I tried to do it gradually, but it didn’t work out.)  Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.

The next day was an in the bed day.  Just one big ache, and the tinnitus was yelling!  So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.

Today, I awoke feeling better.  I got up, went downstairs and started to make my own breakfast.  Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.

Twice today I had an attack!  However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack.  They both came on fast, and we worked fast getting the meds in me.  Stuart got everything prepared, but it calmed down.  On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops.  I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant.  I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.”  He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling.  However, that passed, I felt alright.  Then a bit later, I was oh so sick.  I wonder if the “nervous” stomach was a clue?  I’ll try to pay more attention to the next time that happens.

**added to post Thursday morning**  I didn’t have to wait long.  I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin.  This attack was already in full-blown nastiness before I could move my head to get meds in me.  It didn’t last long, thank goodness.  And I will spare you all the details this time.  One thing that continues to linger with me about it, is my headache.  I slept a few hours, but my head hurts so much.  I finally felt I could keep something down long to eat a little, just so I could take a pain pill.  Right now, my head still hurts, and my stomach hurts….what a great way to start the day.

I don’t understand it.  3 attacks in less than 24 hours?  It’s such a turn around from just a few months ago.  Do I continue to try to get back to that with Dr. Gray?  Or do I push for a different treatment?  But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure?  So many questions, and some how, I don’t think I’m going to get many straight answers.  I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens.  I think I’m going to get a lot of , “it’s up to you”, but I really need some advice.  I hope they won’t let me down, and I really hope they will work together on this.  What will I do if one suggest one treatment and the other suggest something else?  *OK, my mind is officially off-line right now*

I planned to do a post on how to better prepare ourselves for the holidays.  You know, trying to reduce the stress of the season.  I came up with a fool-proof plan for me.  I’m just not going to do it this year.  Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.

I can’t go to parties right now.  The noise makes enjoying myself impossible, and I feel very isolated.  Since Stuart just lost his job, we can’t give presents like we normally do.   We really need to be on a tight budget, who knows how long this will last.  Hopefully, not long, but we need to be prepared.  Plus, I simply don’t have the energy to do it this year.  I’m also terrified of having an attack at someone’s party.  Can you imagine?

I do think I will send out cards.  I want to send some people personalized letters that explain why I’m AWOL this holiday season.  Explain more about my illness, and stuff like that.  I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship.  (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)

I still really need to work on learning how to know when I’m doing too much.  I don’t like having the fall out after a good day.  My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..”  What a great idea!  I’ll be trying this one, as soon as I feel I can move.

I hope everyone has a wonderful holiday season.  I’ve read a few articles that talk about how to make it easier on people with chronic illnesses.  The biggest one is to know how to limit yourself.  You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something.  There are lot’s of hints, but I felt that was the biggest thing.  Take your time, and enjoy yourself, don’t push yourself too hard.  Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?

We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year.  We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard.  I hope.  I really hope I don’t get depressed because I feel left out.  I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too.  (of course, without me there, will they really be able to have a good time??)  hahahaha

Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others.  This is something I really want to work on.  She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things.  I want to stop that, and feel joy that others have the opportunity to do things I can’t.  (Thinking, this will merit its own post.)

Here’s the link to a couple of Toni’s blog post I think you might find very interesting.  The first is a post about Heading off Holiday Stress, the second is How to turn Disappointment into Contentment.  I think both are very useful for making the holidays easier.

Oh, What a Day!

On By WendyIn Chronic Illness7 Comments
by Wendy Holcombe (created on Photoshop)

Today was absolutely beautiful, and I woke up without a headache…(meaning a little bit of a headache, like normal, but no where near like I’ve been having lately…yes, I always have a headache, sometimes it’s just much, much worse than other days.)

The weather was gorgeous, in the low 70’s (F), with a slight breeze.  The leaves are starting to fall off the trees.  I took my lunch out on the back porch and enjoyed the sun and warmth.  There was a gust of wind and a flurry of leaves blew over head, it reminded me of a scene from Winnie the Pooh’s Blustery Day, however, my day was not that blustery.  I had a giggle.

We decided since I was having such a good day, we would go somewhere.  We went to the little mall near our place, and bought Stuart 2 new ties for him to wear to interviews.  They are a bit bold, and show more of his personality.  I think they show confidence!  I hope the people he interviews with also thinks so.  (today was Stuart’s last day of work, just a couple of hours really, turned in his computer and told them where he left off.  The owner said he felt so bad, but he had realized if they had one bad month they would be in trouble.  They have decided to put the project Stuart was working on, on hold…so no reason for Stuart to be there.  Stuart is so great about it.  I think it’s the Buddhist in him, I’m not as philosophical…but I’m trying.)

Today, we didn’t think too much about that!  We walked the mall, window shopping.  Then we needed to go by Wal-Mart to pick up a couple of things, yes, I don’t really like shopping at Wal-Mart either but it’s 1 mile from our house, so convenience sometimes wins.  Unfortunately, I really used up most my energy in the mall, and shouldn’t have gone to Wal-Mart.  We stayed there much longer than I should have.  By the time I got home, things were spinning a bit, especially if I moved my head too fast.  I bent down to feel the dog, and the world when Whoosh!  I’ve been lying down since then.

I had a great day!  Lived it to the fullest.  (yes, going to the store is living it up for me.)  However, I really need to learn where my cut off point is.  I push myself beyond my limit way too often.  If I feel good, I take advantage of it.  Hopefully, I won’t be paying for it tomorrow.

Right now, my hip hurts, my back hurts, my tail bone hurts, my head is starting to hurt (worse), and I’m very off-balance.  Think I over did it?  Yeah, me too.

So how do you learn what’s enough?  Often I don’t feel that tired, or hurt that much, until I stop.  Do you know what your limits are?

With the holidays coming up, I really need to figure this out.  Right now, I’m thinking, we won’t be going to any parties.  We may try to have a few people over to our house  We think it would be better in my controlled environment, I can go lie down if I need to.  Or I can get away from noise if I need to.

Thanks for any advice.

Think I’ll be posting more about how to handle the holidays soon.

Gratitude

On By WendyIn Chronic Illness, Meniere's Disease10 Comments
image courtesy of sodahead.com

This post is for the Chronic Babe Blog Carnival all about Gratitude.

I’ve been thinking a lot about this lately.  Everyone here knows the people I’m grateful for…my dear blogging friends, the friends who have stuck by me…and most of all my precious husband.

I could write an entire blog post on how grateful I am to my husband for all he does, but I think I gush about him enough.

One of the biggest things I’m grateful for is this blog!  Picnic with Ants…gives me a place to get out my emotions, to know I’m not alone, to work out problems, to make other’s aware of what my Ant’s are…especially Meniere’s Disease.  When I started this blog I was fighting my illnesses tooth and nail.  Thanks to my friends on here, I’ve learned to accept them as a part of me.  No they don’t define me, but they are a part of me, and I will learn to walk with them.  That in no way means I’ve given up, it simply means I accept this time in my life.

This is a safe place for me.  A place where I can be myself, and if people don’t like it they don’t have to read it, however, I’ve very grateful for those of you who do.

At times I realize I’m grateful to be in this place I am right now.  In a way, yes, I’m grateful for this disease, we call Meniere’s…and my list of other conditions.

I have learned so much during my struggles with chronic illnesses.  I’ve always been a compassionate person, but I think I’m more compassionate.

I notice things I didn’t really see before.  I’m grateful to my doctors who are trying everything to give me some relief.  To the staff at Duke for all the things they do that I don’t even see.  I’m grateful for the orderly who was so kind to me while wheeling me to the recovery room, and stopped by later just to make sure I was alright.  I’m grateful to the guy at my grocery store who knows I’m hearing impaired and will make sure he looks straight at me when he talks and enunciates his words so I can read his lips if I can’t hear what he’s saying.  I’m grateful for the technology that is available today,my computer, my hearing aid…and possibly in the future a cochlear implant.  All different technologies, but all help me communicate so much better than I could without them.

I’m also grateful

  • I can still appreciate the seasons
  • I can still read and escape in a book.
  • I can research doctors, illnesses, treatments…just think a few years ago we couldn’t do that as easily as we can now.
  • I have doctors who don’t mind questions I have, are thrilled that I’ve researched my condition, and who genuinely care.
  • I have health insurance…and that bothers me, it just shouldn’t matter…but it does.
  • that things continue to change.  One day I may be very depressed and blue, but the next day I may see the sun and find the clouds that were so thick over my head are clearing.
  • For my dog and cat…especially my dog.  She has been with me for 18 years, she’s now 19.  A year and 4 months ago we were told she had a very aggressive form of bladder cancer, they couldn’t operate, and she would last at most another year, probably much less.  She doesn’t show any signs of slowing down.  I guess no one told her she was sick.  : )
There is so much in my life I could whine and bitch about…and I do from time to time (more times than I want to admit), but there is so much I’m grateful for…much more than I could list here.
Thanks to Chronic Babe for making me think about all the things I’m grateful for.

I’m not alone….d*$& it!

On By WendyIn Chronic Illness5 Comments
I Am Not Alone. by Wendy Holcombe Nov. 2011

After posting about my attack on Wednesday, I had an outpouring of people who either commented on the post or emailed me personally to tell me I’m not alone.  As comforting as it is to know someone else understands, it’s heartbreaking that there are others who have to go through this too.

I really wish that no one could empathize with me.

One thing about my attacks recently, they don’t last as long as they used to….but it feels like they do.  I’ve had attacks last over 12 hours, the last one lasted over 3, the one before that was less than an hour, yet each felt as if they lasted for an eternity.

Angelea from A Day in the Life with Meniere’s said, “The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours.”  I’m the opposite, every time I have an attack, I’m terrified it won’t end.  I know it always has…but what if this time it doesn’t….it’s unimaginable, yet…it fills me with terror.  I’ve read of people having vertigo for extended periods of time.  Weeks, months, years… indefinitely.  Do they always feel like I do during an attack?  How do they live?  Or are they using the word vertigo loosely?  I know it varies in intensity, but all I can think of is the terrifying sensations I get.

Most people who write about their attacks, don’t go into the detail I have.   We all know they are horrible, but somehow I wished for my friends that it wasn’t as bad for them.   I was even a bit surprised when I heard how much so many of you could relate to everything that was happening to me.  (I really wish you couldn’t).  We hear each other say, I had a bad attack complete with throwing up for hours….but we normally don’t talk about the rest.  Thank you all for sharing your stories with me.  People (especially our doctors) really need to understand the torture we go through.  I keep wondering if these specialist we see have ever seen an attack.   Do they just know what they’ve read, or have they ever experienced anything like it?  Or seen a loved one go through it?  (I plan to ask my doctor the next time I see him.)

I emailed my doctors.  I heard from Dr. Gray already, and unfortunately she is also thinks that although I’ve had some good results with the patching, the results to not stay sustained, and this does not look to be a long-term solution.  That was hard to hear, even though I already knew it in my heart.  We’re waiting to see what Dr. Kaylie thinks my next move should be.  I had good success from the endolymphatic sac surgery on my right ear.  I’m almost positive that the majority, if not all, of my attacks since I had the surgery have been from my left ear.  So that is a consideration.  It’s a rough surgery, and recovery is hard.  From what I’ve heard from two other friends their recovery was much worse than mine.  So I do know there is a chance that it could be worse next time.   However, I haven’t talked to Dr. Kaylie yet, we’ll discuss my options and see what happens.

I’m so confused by all of this though.  I’m not sure if we’ll discontinue trying to keep my cerebrospinal fluid regulated.  I would think that we’d need to do this.  So many questions.

Again, I’m going into this bad time just as the holidays approach.  Last year, I had to wait from early November to late January before I had my second set of patches.  That was some of my darkest time.

I say so often, that I accept this illness, it is a part of me.  But I think a lot of that is what I want to believe.  Today, I broke down and just screamed…”I DON’T WANT THIS TO BE HAPPENING TO ME ANY MORE!”  I thought it was better.  If I could have seen this future in January, I would have spent those months symptom free so differently.  I tried to get my life back, to start a future.  I spent 30 class hours plus many, many hours outside of class, working to become a foster parent.  I started a garden.  I bought a car.  I bought hearing aids.  My life was all falling into place….then it came crashing down.

Now I look back.  If I had known all that I was doing was wasting time.  We won’t be able to foster.  The garden died.  I now have a car I may never be able to drive, and I have a hearing aid that sits in a box because my hearing has deteriorated so much in that ear it’s useless.  ($2000 for 3 months of use, I don’t think that’s a very good bargain.)

So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest.  Travel.  Spend as much time with friends as possible.  Go, and do the things you can!  Don’t waste a day!  And most of all, don’t plan for the future!

So yeah, I guess today I’m having a pity party.

I keep thinking in January, before the patches, I was contemplating suicide.  I can’t go back to that.  I just can’t.  But if I get to the point where I’m having the horrific attacks multiple times a week…often every day…I can’t say that I won’t fall back into that deep dark hole.

No this disease is not me, I do accept that it is part of me….but when it takes over my life and becomes all of me, that, I can’t accept.

I know, I’m jumping the gun a bit, and have some major issues with regrets right now.  I haven’t given up, and I’ll keep fighting for me.  I’m not fighting the illness (as in not accepting it), but I am fighting for my life.  For some balance.  For some relief.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J, and NaBloPoMo.

What is Between Love and Hate?

On By WendyIn Chronic Illness2 Comments
photo courtesy of ilovemydesktop.com

This was actually a prompt on NaBloPoMo in October, I saw it on another’s blog and started to think about it…and realized the answer…Me.

To be more specific, how I feel about me and the things that have been happening to me.

I still love me….but at times I really hate my life.  I know that sounds negative, and I don’t mean that I always feel this way…but sometimes…when I get overwhelmed by the losses, the pain, the vertigo….I hate it.

Such a dichotomy.  Sometimes I feel there are two of me.  There is the person who hates all of this, who just wants everything to return to normal, to be like it used to be.  Then, there is the person, who is grateful (yes, grateful) for all that I have learned, the friends I’ve made, the life I have now.

Yes, I have chronic illnesses, I often wish I didn’t.  However, they don’t define who I am.  I’ve found that some people only think of me in terms of my illnesses now.  That’s sad.  They can’t see the person I still am, or the better person I’ve become.  I do feel I’m a better person now.  Don’t get me wrong, I wasn’t a bad person before, but I feel better about myself now.  I actually have more confidence, feel like I can make a difference in a person’s life, and I’m more appreciative of what I have.

Do I hate my life…sometimes.  But most of the time, no.  My illnesses are a part of me.  It isn’t all bad.  Yes, I have some very bad days.  However, I feel closer to my husband than ever.  I have a great support system.  There is much to be grateful for.

What is between love and hate?  Perhaps, acceptance.  Accepting that the things I hate and the things I love about me can live together in harmony.

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo.

P.S. – Update 2 weeks after the last patches.  I think they are working.  The spinning is better.  I have a bit more energy.  Some days are better than others, but over all, I think I’m better.  I have been having migraines, but I really think they are more weather related.  My hearing hasn’t returned, but to live without the spinning, I’ll learn to live with the loss of hearing.

November is NaBloPoMo Month.

On By WendyIn Chronic Illness4 Comments

This is the month to do so many things, every day for the month…and celebrate Thanksgiving too…how will I get it all done?

First, I will be participating in NaBloPoMo this month.  Yes, you will probably get very tired of me, and I’ll probably run out of things to say.   I can hear all of you right now…”YOU, run out of things to say?”, while rolling on the floor laughing!

Later today, I’ll be sharing a great list written by Allison at Taking Life For a Spin  of things you really shouldn’t say to people with a chronic health problems.  I’ll be looking forward to hearing what everyone else may want to add.

I’ve also just joined 

National Health Blogging Month by Wego Health gives writers prompts for each day, some days I’ll probably use their prompts, other days I’ll probably just be posting about what I think is important.  #NHBM allows for 2 free posting days.  Days when you just can’t post.  That’s a good thing for people who have a chronic condition.  As we all know, some days we just can’t.

On my other blog, Create To Heal, I’ll also be participating in Art Every Day Month over at Creative Every Day…this is a more laid back challenge.  It’s a challenge to simply Create More, if you happen to miss a day, don’t give up…this is incentive, not a contest.  This challenge also doesn’t require a post every day, you can post once a week, what you’ve been doing, just what ever feels right, and what ever you can do.  I like this, but I plan to post every day.  After all, I’ve been trying hard to create something every day, may as well let you see it day by day.

If you’d like to be involved in NaBloPoMo, just go to this link http://nablopomo.blogher.com/ and follow the directions.  You can add your blog until November 5th, but you must have posted every day in the month of November to be eligible for the prizes.

But why November, I know that all of this is a take off from NaNoWriMo, where writers are challenged to write a novel in a month, and it started in November.  However, again I ask, why November?  I think it’s going to be a tough month to do something like this.  Every Day.  At the beginning of the holiday season.

Granted, we don’t do much for Thanksgiving, and I don’t think Christmas celebrations will be as busy this year.  My hearing problems are prohibiting me from going to many parties.

To wrap it up then, I think this should be done during a really boring month, like…um…August, September…something without a major holiday.

This is going to be a challenge.  As I said before, there are days when we just can’t…..however,

I’m going to try.

wish me luck, and please, let me know if there is something you want to know more about.

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo