Tag: hearing loss

So, What am I mad about now?

On By WendyIn Chronic Illness, Life, Meniere's Disease, stress7 Comments
I Don't Like Me When I'm Angry!

I mentioned in my last post that I’m dealing with some anger issues.
I’m not talking about getting a bit upset here and there, I’m talking about some deep seeded resentment.  Something down in my gut that is just eating away at me.  Perhaps that is a bit strong…but I wanted to make a point.

I’ve been snippy, grouchy, teary, snappy….  Oh, let’s just say it, I’ve been a bitch lately.

Not all the time, at times, I’m a perfectly likable me.  Positive, light hearted, smiling, laughing…  Then unexpectedly, something will hit me in just the wrong way, something that normally wouldn’t mean anything, and I want to explode.

Finally, I tried to take a step back from the situation.  And ask myself, what are you REALLY mad at.  I’ve come up with a few things, some I bet you have felt at times, others may just be me.  I don’t like being like this.  I try very hard to keep a positive attitude, to believe things will work out, to understand that even if they don’t, I will survive.  No, not just survive, I will thrive!

It has been hard lately.  Spending almost every minute lying down.  Having horrific headaches, hearing things that aren’t there….well you all know what I’ve been going through.

And that my friends is what, I believe, I’m mad about!

I don’t want to sound petty, or ungrateful, or as if I don’t have hope.  This is just anger.  It may not be totally justified, and it’s not fair that I keep snapping at my husband, but it’s there, and I felt like I should discuss it.  (perhaps giving it a voice will help it to go away.)

I’m MAD…

  • that I’m not cured.  I know I kept saying that I understood that this was not a “cure”, that I know I still have Meniere’s Disease, and that I could handle it if my symptoms returned.  That this procedure gave me hope, and I would cherish every moment I had as a “normal” person.  (I’m not saying that those feelings have changed.  I still feel that way….but I’m still angry that it’s happening…and I don’t like myself very much for saying that.)
  • that I thought this was over.  I don’t feel that I was being as realistic as I should have been.  I’m not sure I was being honest with myself.  I knew the possibilities it could happen again, and I would need more treatment…but I don’t think it really sank in.  I put those thoughts aside and thought about the future…for the first time in a long time.
  • that I don’t feel I can plan for the future any more.
  • that I’m scared.
  • that I can’t do things I need and want to do.
  • that my house needs to be cleaned.
  • that Stuart has to do everything, and I keep getting angry with him when things aren’t done.  Or done the way I would do it.  How can I get angry at him for this?  Or am I really just angry because I can’t do it?
  • at my friends, who haven’t gotten in touch, who haven’t offered to help…the most I get from most is a quick note on facebook.  I know this has been going on for a long time, I know that my friends have lives and responsibilities.  I don’t blame them.  But I’m still hurt, and angry.  I don’t want them to feel bad.  I don’t know what I want, or expect.  I have 2 local friends who really keep in touch with me.  1 emails me often, 1 often chats with me on line.  (and I know he would be over to see me more often if he wasn’t having troubles of his own right now.)
  • at my family.  Who have never offered to help in any way.  (I must put in here, that I didn’t expect it.)
  • when I read about others who have so much more help.  Who have friends who bring them dinner, or family to come stay with them for a while, or someone to just sit with them.  (again, don’t get me wrong, I am so very grateful for what I do have…especially my husband)  But I am hurt, and disappointed that I don’t have more people who reach out.  And I’m mad at myself for being jealous of those who do.

Oh, I’m certain I could go on and on, but I’m sure you understand by now.

This anger isn’t deserved.  It’s not even real in some instances.  I think it’s mostly about the situation.  I don’t want to be in this situation, and it makes me mad.  I don’t want my husband to be in this situation, and it makes me mad.  I don’t want to have my life on hold, and it makes me mad.

I’m trying to write this objectively, and honestly…but I’m not sure those two things go together right now.

When I got so much better after my patches in January, I started to see my friends at gatherings and things.  At first it was very hard.  I was angry at them.  It’s hard to explain.  These people mean a lot to me, but I felt like they forgot me when I wasn’t able to do much. Most didn’t ask Stuart if he needed anything.  Even when I would reach out and say exactly what I needed, I usually didn’t get it.  (I’m not talking about big things here, I wanted contact, emails…anything)  As I said before, I understand that people are busy, they have lives, and it’s hard to deal with a friend who has been having health problems for a long time, it’s not like it’s something that just goes away after a visit to the hospital, or one time bringing a caserole…this illness lasts…well, a life time.  Finally, I was beginning to feel better about things.  We would go to parties and I felt that I could mingle, and talk with people, and not feel that under current of anger.  I don’t want to feel like that again.

I am overwhelmed by everything that is happening to me.  In just the past 2 years my hearing has gone from some hearing loss in my right ear, to severe hearing loss in both ears.  I just got hearing aids in March, and I can barely hear out of them now.  When I don’t have my hearing aids in I can barely hear myself talk.  I realized I was screaming at Stuart the other night because my throat started to hurt.
But at times, for short periods of time, I can hear better.  So I don’t know what to do about the hearing aids if my hearing is fluctuating so much again.  (I’ll see Dr. Kaylie next month, I’ll ask him then.)  Of course, I’m hoping that after seeing Dr. Gray I will have some answers and my hearing will improve again.

This hearing thing makes me so mad!  Partially because of losing my hearing…but not really…I think I’m handling that pretty well.  But because having my hearing drop has always been a sign of a Meniere’s Vertigo Attack coming on.  So now, I’m constantly on alert.  I’m so jumpy, and jittery.  Every time I move my head and get a bit off balance, I’m convinced I’ll be spinning soon.  Or, I start to get used to it, and start to ignore it, like I did the other day…and I was almost hit with a full blown attack.  (yesterday, was more of the same.  Lot’s of mini-spins.)

I am trying very hard to deal with this anger.
Dang-it!  I’ve had some crappy stuff happen lately, and I’m pissed!

I’m also trying to come to terms with it.  To feel some of it and not bury it.  Just writing this helps.  Now I hope I can deal with it, and move beyond.

But, I’m also very grateful that if this was going to happen, it did it now.  Before we brought a child in to our lives.  I’m grateful, that I have good doctors who really care, and will do all they can to help me.  (I just wish I could have gotten in to see them faster. – and yeah, I’m pissed about that too!)  I’m more than grateful for my loving husband, and all that he does.  I just wish I could help him more, or get him some help.

I also want you to know…ALL OF YOU…how very much you mean to me.  How much your encouragement, and caring words have helped me through many a rotten day.
**I saw a post on Fly With Hope today, and I thought, “Yes!, that’s what I wanted to say!”  http://flywithhope.blogspot.com/2011/08/less-bitter-more-thankful.html  Thank’s Kelly, I needed to hear this.  I’m feeling more thankful already.  I promise I will not let this anger fester and become unrelenting  bitterness.

An Evil Goblin Lives in my Head.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

I’m finding the drawing journal to be very therapeutic.

Day before yesterday was a very, very bad day.  I was awakened by one of the worst headaches I’ve ever had.  The lower part of the right side of my skull, and down my neck was…well, I can’t think of a good adjective…let’s just say, I was in a huge amount of pain.

Throughout the day I kept trying different meds to see if anything would work.  They sometimes made it better, often not.  I was nauseous, and just miserable.  That afternoon, I turned to look at Stuart and the world moved.  I felt all the symptoms of an attack starting.  The world was off-balance, but not completely spinning yet, I got HOT, I didn’t feel like my head and my body were listening to each other….I told Stuart…”It’s coming!”  He ran and got my medication, some cool wash clothes, and trash cans….he was getting prepared.  I’m happy to say the whole world spinning part didn’t happen, I didn’t throw up…but I was amazed when it started to calm down and didn’t become a full-fledged vertigo attack.  (I have a question, anyone else out there who has these attacks, when it first starts to you really have to go to the bathroom…bad?  Every time it starts, I have to go!  I don’t want to get up and move to go to the bathroom, I just want to stay as still as possible…but I can’t I have to go!)

For the rest of the day, the tinnitus was very loud, my head hurt, and I was exhausted.  I had to use my walker.  (very strange thing I’ve noticed, a lot of time when the tinnitus is at it’s worst, I can hear better….isn’t that the strangest thing you’ve ever heard?)

I’ve decided that I have an Evil Goblin living in my Head!  And he looks something like this:

Doesn't he look Evil?

These are his torture devices:

Look Familiar?

Here’s another sketch of my Evil Goblin (the original looks better.  I didn’t realize photographing graphite was so hard.)

face of the Evil Goblin in my head.

I hope you have enjoyed a view in my head.

Wanted to let everyone know that my appointment with Dr. Gray has been moved up to the 22nd.  I’m still on the cancellation list and if anything comes up before then…keep your fingers crossed.

Living for the day.  One day at a time.

So much to say….

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain13 Comments

I keep thinking of posting, I have composed many wonderful posts in my head as I lie in bed waiting for sleep will come….but of course, I can’t remember any of it once I wake up.

I don’t know what’s wrong with the spacing on this post.  I’m sorry it doesn’t have breaks for a lot of it.  I put them in, but they didn’t show up.  

**Fair warning**  This post is a lot of stream of consciousness talking.  Things that are on my mind.  You are welcome to read part of it, or non of it, or all of it….what ever strikes your fancy.  Just beware…I may ramble a bit.

My symptoms lately have been very strange.  Perplexing, is a good word.

photo courtesy of scienceblogs.com (Migraines)

I’m very lucky, I am NOT having vertigo!  But here’s what’s going on:

  • daily migraines – on a scale from 3 – 9  (one day was a 10 for about 10 – 15 mins, Stuart was ready to take me to the ER…but it subsided)
  • tinnitus going crazy – at times my tinnitus is so loud I swear a jet engine is taking off in my skull.  Usually, it last a couple of hours, slowly returning to my normal hum.  But days like yesterday….well, the EXTREMELY LOUD ROARING lasted for about 8 hours!  For a few days every night it would start around 10:30 pm and last until about 3 or 4am…then I could finally sleep.
  • my hearing was better during the loud tinnitus – yeah, WTF?  I put in my hearing aids and I could hear all the dings that sound when you first put them on – in BOTH ears.  This only lasted a few hours. This is the second time this has happened.  I’m glad because it shows me my hearing can improve in that ear, but it’s a bit much when it happens in conjunction with the roaring.  It’s also very confusing.
  • fatigue – are you surprised by this one?
  • disequilibrium – No I’m not having vertigo, but I get so off-balance some times.  I’m also getting that “woosh” feeling when I move my head too fast.
  • I keep feeling like I’m on the verge of an attack, but it doesn’t come.
Dr. Gray sent me an email that said she wanted to “test my pressure now!”  But her scheduling secretary said the soonest I can get in is August 30th.  He emailed me this, I emailed back and asked to be put on the cancellation list, telling him I only live a few minutes from Duke so it wouldn’t be a problem to get there in a hurry.  He didn’t respond, just set up the August 30th, appointment.
I’m not sure Dr. Gray is aware of how long it’s going to be before I can get in there, I think I’ll drop her a line today.  I hate to bother her, I know she’s a very busy lady…but I’m suffering here, and she did say she wanted to get this done “now!”.
Accomplishments:  Despite my symptoms, I have been able to do a few things. (Yes, mostly stay flat on my back, because it seems the symptoms are less the more I stay horizontal.)
On Friday, I had a massage.  Bliss.  I was having a very bad day with the disequilibrium that day, but made it through.  My massage therapist is a wonder, and very understanding about my conditions.
On Sunday, I went to the grocery story with Stuart, a whole hour and a half out of the house!  I felt like crap, but it was nice to get out!
On Tuesday, I went to a Home Owners Association meeting.  That didn’t go very well.  I was glad I could go, but had to rush home afterward.  The tinnitus got so loud while I was there I couldn’t tell the people were actually talking.  (I could see their mouths opening, but could not hear the words.  All I could hear was the rumbling.)  Still glad I went.
On Wednesday, it was a very LOUD day, as I mentioned before.  So most of the day was spent on the couch or in bed.  But last night right before I went to bed, I felt better.  So I cut up a bunch of tomatoes from our garden, and some shallots, also from our garden, with some garlic and had them in the crock pot (the pot part of it) in the refrigerator ready to turn on today to make spaghetti sauce.  I’m using fresh herbs out of my garden, so I’m not adding those until it’s almost finished.  (unfortunately, neither Stuart nor I got up at a reasonable time today, so we’ll be having spaghetti tomorrow.)  Haven’t tried to have spaghetti since my Dietary Fructose Intolerance diagnosis, hope it goes well, I really miss it.
Today.  Again, I’m mainly flat on my back, but I’m also doing laundry.  So a bit of getting up and down, but it feels good to do it.
The Artist’s Way workshop…well, that isn’t going so well now.  The farther I get into this book, the more I don’t agree with some of the things she suggest.  Last week was supposed to be reading deprivation.  That’s right.  No reading for a whole week.  Also no TV, or anything like that.  Ummm, no reading?  Well, that just isn’t going to happen with me.  I love to read, and get a lot of inspiration from it.  I just don’t get that one.
This book says you don’t need to be religious to follow the workshop.  But it continually talks about God, and how your creativity comes from Him, and by opening yourself up to his gift you will find your inner muse.  I don’t want to get into a talk about religion here.  But, I’m not that religious.  I’m not an atheist, but I’m not someone who believes I should turn everything over to God and it will work out.  I think he would expect me to do things for myself.  To work hard….  I could probably get in a whole big theological discussion here.  But I’m not trying to.  I can see where some people will be able to get a lot from this book.  But I just don’t think it’s for me.  I do enjoy the “morning pages”, and the Artist’s Dates.  I will try to keep those up.  I haven’t completely dropped the workshop…but I’m not as enthusiastic about it as I was when I started.
photo from weblo.com (I just thought this picture was really cool!)

I wish I knew of a different Creativity Workshop that wasn’t centered around God.  I’ve searched and found some possibilities, but I don’t want to dish out the money on books that I don’t know enough about.  I did find a couple at the library that I have ordered.  We’ll see how that goes.

I guess I will have to change my that goal on my 101 things to do in 1001 days.  Perhaps, instead of saying, complete the Artist’s Way Workshop, I will simply say, to complete a creativity workshop?
I think I’ll easily pass my goal of reading 100 books this year.  (I made that goal on Jan. 1st).  I’ve read about 15 in the past month.  Funny, how much you can read when you can’t do much else.  I’m proud to say that I haven’t just been reading popular fiction.  I’ve been reading art books, self-help books, classics and I’ve even been reading a book about the history of the Free Masons.  (that’s a really strange read)  I’m slowly reading Uncle Tom’s Cabin, but it is quite a good book!  I like to jump around from book to book, what I’m in the mood for at that moment.
Things that are on hold:
Of course having these symptoms have put a lot of things on hold.  It makes me sad, but I’m hopeful I will be able to continue these in the near future.  Including:
Becoming Foster Parents
Losing Weight
Exercising
Taking an ASL (American Sign Language) class.  I planned to take an ASL class through a continuing education course at our local technical college, but it starts August 16th.  If I can’t even get in to have my pressure checked before August 30th, I don’t think it’d be a good idea to start trying to take a class.  I’m checking some things out at the library…we’ll see what I can learn on my own.
Gardening – The garden has been severely neglected.  It’s time to start thinking about a fall crop, but that isn’t happening.  Our summer crops didn’t do very well.  As I think I’ve said before, we’re learning, and this year we have learned a lot about what NOT to do.
Some art projects I have started, and some I have planned.
Some things I want to do to the house.  I’m amazed at how fast our house can get out of order once I’m disabled.  This house is just too big for us.  Especially when Stuart has to do everything alone.  (more on this later.)
Almost everything except staying flat on my back….ugh!
Coming soon: Some of those wonderful posts I’ve been thinking up….Anger – what are you really mad at?…..Finding my Happy Place….

Artist’s Date Week 3 – let’s play with Photoshop!

On By WendyIn Chronic Illness, CSF, Disability, Meniere's Disease, PainLeave a comment

I’m not sure how much The Artist’s Way workshop is helping my creativity.  I find that most of the time in my “morning pages”, I write about being chronically ill.  Perhaps that is what is causing my creative block, what is standing in my way?

However, I do like the fact that I have to take at least 1 hour each week as an artist’s date.  I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that.  I’ve had to improvise, and that’s a good thing.  It’s teaching me that I can create, something, even when I’m flat on my back.

One of my 101 things to do in 1001 days, is to learn Photoshop.  So today, I created something using Photoshop on my artist’s date.

 

 

The flowers in this are photos I took of flowers in my garden.  Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text.  I’m learning!  And I had fun!I’m feeling much better about things.  Don’t know why…just kicked myself in the butt, and said enough!

Still having the disabling headaches, and I had no idea that tinnitus could be this loud!!  I think I will go insane if I have to hear this all the time.   Oh, wait!  What’s that you say?  Too late.  Yeah, I know.   Did I mention that the sounds in my head are not voices?  Well, not lately anyway.  Ha!

Yes, I’m in a strange mood.  You have industrial machinery running inside your head for days and see if you don’t get a bit punchy!  Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the???  (I’m trying to stop swearing.  Probably not the right time for that, but I’m giving it the old college try.)  What does that mean anyway?  “The old college try”?  Hum.

Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache.  Sounds like I still have low pressure.  ??? Maybe???  Oh, who the….oh wait, I’m not swearing….um….who in the world knows?  (better?)

happy thoughts!

 

Way Too Much Stress!

On By WendyIn Chronic Illness, Meniere's Disease, stress3 Comments

Another venting post.  If you are tired of hearing me bitch, please just ignore this post and come back next time.  : )

I think I’m dealing with things pretty well…considering.  Stuart says that I just brush things off, that I’m not realizing how much has been coming down on me.  Perhaps that’s why I haven’t been feeling well?  I don’t really feel stressed…but I think it’s coming out in other ways.  Deep Breath!!

As you all know I went through a scare with Stuart recently.  I must admit this has gotten to me more than I want to acknowledge.  I realized this yesterday when we were lying in bed, laughing about something, and I grabbed him and looked him in the eye and said, “DON’T YOU EVER SCARE ME LIKE YOU DID!” And yes, I was shaking him a little bit as I said it.  What the????  And I keep dreaming about it.  We will be together in my dream and I will look over and see him as he was when he walked in the door on that fateful day.  Not a good dream.

Now I have something else on my mind.  One of my best friends is going through marital troubles.  She has twin girls who just turned 3.  Her marriage has been strained for the past couple of years.  Night before last he was arrested for physical abuse.  I’m so worried about her.  I’m happy that she is on her way to her mother’s, and will be away from the situation for a while.  But I’m concerned.  And I’m afraid she won’t talk with me about it.  I knew things weren’t right between then, but she hasn’t talked to me about it really.  She didn’t want to “bother” me with everything because of what I’ve been going through.  That really bothered me.  It really bothers me that my friends don’t think I could still be a friend because of my health problems.  Am I not still the same person?  Am I not still the person she has confided in for years?  Or is she just using that as an excuse because she knows I never really liked her husband.  Or because she was embarrassed?

But she isn’t the first friend who has told me that they didn’t want to “bother” or “burden” me with their problems because of everything I’ve been going through.  That hurts, and I just don’t get it.  For one thing, I’ve been a lot better since January.  And even when I was more ill, it would have helped me so much if my friends still made me feel needed.  I had to start this blog to start feeling needed again.

I shouldn’t say I don’t get it.  I do.  But people just don’t understand.  I don’t need to be left alone to wallow in my illness.  I need to feel needed!  I need my friends.  Instead I’m often avoided.  Even now that I’m feeling better.  I feel like some of my friendships have not survived.  We are more like acquaintances now.

I’m still not feeling “normal”.  I have “slosh head”.  My hearing has been down for a month now.  So I’ve been on constant alert that I may be having an attack at any moment for weeks…heck, this is beginning to feel like my normal.  I am so tired so much of the time.  What is wrong with me?  I’m sleeping 10 – 12 hours a night, and often take a 2-4 hour nap during the day.  So some days I’m only awake for about 8 hours.  Oh, and the headaches.  I’ve been having more and more headaches.

OK, perhaps the stress is getting to me.

Much better.

On By WendyIn Chronic Illness, Disability, Life5 Comments

I wrote this post yesterday but for some reason I didn’t post it.  I still want to let everyone know what was going on, but I also want to say that the tinnitus has calmed down to a tolerable level, and my hearing is almost back to normal.  I’m feeling much better!!

But this was yesterday:

As we all know, I’ve been under a LOT of stress lately.  I’m really trying to take care of myself, but I still feel pretty crummy.

Last Thursday, I woke up and the hearing in my left ear had significantly dropped.  Now, it’s been over a week, and still my hearing is down.  I can’t remember a time this has ever happened before.  Normally, if my hearing drops I have an attack shortly afterward.  My last attack came after 4 days of diminished hearing, and that was unusual.

After the scare with my hubby, I have been so very tired.  I’ve been sleeping A LOT, and mainly just lying around.  I keep feeling off-balance, but not spinning.

Last night the tinnitus significantly increased.  And I really mean Significantly!  My left ear is roaring so loud I can hardly concentrate on anything else.  Sleep is almost impossible.  (I did doze on and off all night.)  It’s just so dang LOUD!  My head hurts.

I just want to scream, “What the F*%&?”

I’ve been feeling like I’m on the verge of an attack for over a week.  Hearing dropped, fullness increased, tinnitus increased, and disequilibrium is icky.  Being on constant alert is so tiring, and painful.  Yes, I said painful.  I am in knots, all over my body.  I am so tense I just can’t relax.  Every night before I go to sleep I have to take a hot bath to try to help the pain.

On top of that, I can’t stop thinking about how close I came to losing my husband.  I just don’t know what I would do.  He is just so much of my life.  My best friend, my lover, my care-giver, my provider….  Not only would I be losing the love of my life, I’d be losing my stability.  I feel horrible for thinking about those things.  It has been so hard for me to give up so much of my independence, and I finally came to terms that I can rely on him, and accept his help…but what if, in the blink of an eye, it was all taken away?  Yes, we have life insurance.  I would be provided for monetarily for some time, but money can’t give me what Stuart does.  He accepts me, he loves me, he is always there when I need him, and I need him a lot.

I’m working on it.  But that was a big scare, and it will take some time to deal with it properly.  I just hope it did some good.  I hope Stuart can find more in life to make him happy.  He has a career he’s not that happy in, but we need the money.  I would really like for us to be able to get in the position where he could afford to make much less money, and where I could contribute.  Having a job you love is much more important than having money.  Unfortunately, with the medical bills, and a mortgage, money is pretty important right now.  We thought about down sizing, and simplifying our lives, but selling the house in this market…not really possible.  But I want to have a plan.  A plan to change things.  I want for Stuart to find hobbies or volunteer work that he can find happiness in while he still has to work in a career he really doesn’t like.  We can do this.  I can help.

thanks for listening.  I feel much better today.  : )

Hearing fluctuations

On By WendyIn Meniere's Disease4 Comments

I woke up yesterday and the hearing in my left ear is down, and I felt a bit off-balance.  I slept for 4 hours in the middle of the day.  Then I felt much better, but still my hearing was off.  I went on to have a nice night with my friends.

This morning I woke up and my hearing in my left ear is still diminished quite a bit.  When I turn my hearing aids on it plays 5 notes, I could only hear 2 of them in my left ear.  So, I’m simply not hearing certain frequencies.  Today I took it easy.  Still no spinning, but I’ve got the advanced warning signs.  Hopefully, it won’t happen…but.

I’m very stressed tonight, and got very upset earlier.  I know stress can exacerbate Meniere’s symptoms, but we all know, you just can’t turn off our emotions or what is going on around us.

My friends who were visiting this week left this morning.  I will miss them.  I wasn’t able to do a lot this week.  We went to a very nice party on Monday, but on Tuesday I woke with a sore throat and just didn’t feel well.  I thought I was in the sun too much on Monday and didn’t drink enough, but the symptoms continued.  I still have a scratchy throat.  I don’t know if I have a very, very slight cold, or if I have allergies.  My bet is on the allergies, but really I just don’t know.

Wish me luck that my Meniere’s warnings don’t turn into an attack.

I hoped I’d never say this again…

On By WendyIn Meniere's Disease5 Comments

my hearing in my left ear has been down dramatically for 4-5 days.  Today, I spent the majority of the day too dizzy to do anything.

Showing how I felt. Artwork by Wendy.

No, I didn’t have full-fledged vertigo, but I came close.  I slept late today, I’ve been doing that a lot lately.  (I don’t feel like I’ve been sleeping very well since my shoulder has been bothering me so much.)  I wake up and just don’t feel that I have the energy to get out of bed, I either just fall back asleep, or get up and soon end up back in bed to sleep a little longer.  Today I got up around 10:30am, ate some breakfast, and started feeling worse and worse.  I staggered back to bed, took some medication, and hoped it would go away.

For the first time since I had the patches in January, I closed my eyes and could see the shadows behind my eyelids slowly rotating.  I was so very tired, and just wanted to sleep, but I couldn’t, because every time I closed my eyes it felt like things were moving.

Finally, around 4pm, I started to feel mostly normal again.

I feel so….oh, I don’t even know what my feelings are right now.  Scared and worried, yet confident that the symptoms can be controlled again.  Perhaps, I have another leak.  Perhaps, they need to patch the last leak.  Perhaps, a patch didn’t hold.  And in the back of my mind I hear, “Yeah, and perhaps you had a 3.5 month reprieve and your are just S.O.L. now.”  As I told a friend of mine today, I feel I need to hope for the best, but expect the worst.  If things turn out well, then that’s a happy time, if not, then I won’t be devastated.

I already feel like this darn disease is controlling my life again.  We were supposed to have a CPR class tonight, and we had to cancel, because of me.  There’s so much I’d like to get done on the house, but that will have to wait.  However, Stuart has done a lot.  We still have a home visit on Thursday, but who knows when we might be able to take a CPR class again.  I’m just so afraid, everything is going to fall apart.  But I must say, if things are going to fall apart, I’d rather it happen now.  I’d hate to have a child and decide we can’t take care of him or her because I’m too sick.  These children have undergone enough losses, they don’t need to get in a home and then lose it too.

I’m going to see Dr. Kaylie, my Oto., tomorrow at 4pm.  We have a call in to Dr. Gray.  She may want to do another lumbar puncture.  Who knows.

I know, I’m jumping the gun.  Dr. Kaylie may look in my left ear and tell me that the infection hasn’t cleared up and that’s what is causing my problems.

All I know is that the last few days have felt just like it does when I’m in acute mode with the Meniere’s.  Things aren’t happy, and I could have an attack at any moment.   There is no doubt in my mind that if I hadn’t taken the Valium and Phenergan when I did, that I would have ended up with a full-blown vertigo attack.

I’ll let you know what the doctor says.

Working Girl

On By WendyIn Chronic Illness, Meniere's Disease7 Comments

First, I’d like to thank all of my friends for checking on us after the storms hit North Carolina.  We were very fortunate, all we had at our house was a lot of rain.  The tornadoes came through the next town over.  Raleigh was hit pretty hard, but Durham wasn’t hurt.  It means a lot to me that so many people cared enough to check to make sure we were alright.

This week I’m working for my husband’s company.  His boss and wife are on vacation, and they needed someone to answer the phones and asked if I would be interested.  I was thrilled that I could say yes.  Just think a short time ago I couldn’t commit to anything like this.  Also, I couldn’t hear well enough to talk on the phone.  Thanks to my new iCom link for my hearing aids I can hear the phone right in my hearing aids, it’s great.  It’s like having a blue tooth in both ears at the same time.

iCom
iCom

This little box connects my hearing aids to my phone, TV, iPod, and/or computer.  If I’m watching TV and the phone rings it will shut the volume for the TV off so I can answer the phone.  How cool is that?  I just love this little box.

I’m still so amazed at how much my life has changed.

However, last night I had something unsettling happen.  I was putting my hair up in a pony tail, I turned from the mirror and the world did a little dip.  Just for a second, and it didn’t come back.  But before I would have thought that was the beginning of a vertigo attack.  My stomach did a flip-flop, but that was all.  Hopefully, it’s nothing, but when you’ve had my past experiences you know it could mean something.

What Wonders I am Hearing.

On By WendyIn Meniere's Disease9 Comments

I’m so very happy with my hearing aids.  I had no idea I was missing so much.

My hearing aids, with a nickel and dime to show scale.

My right hearing aid has a larger ear piece because that ear has more severe hearing loss.

When I first put them in everything sounded so loud.  I could hear my own voice way too loud, but within just a couple of hours I wasn’t noticing my voice, and I was enthralled by all the little sounds I could now hear.  The audiologist told me that I might find some noises annoying, and she could program my hearing aids so they wouldn’t bother me.  Some people find the clicking of typing too loud, or high heels on the floor, or even news paper.  I’m more fascinated by the fact that I can now hear these things.   However, I have found one noise that is bothersome.

I told my husband a few days ago, “My hair is too loud.”   (he laughed and said it sounded as if I dyed my hair pink or something)  Seriously though, I hear my hair brushing against the hearing aids.  It makes this swishing sound that makes it hard to hear other things.  When I got my hearing aids I had my hair in a pony tail, I didn’t know my hair would be such an annoyance.  I hope she can program them so I don’t hear that as much.  The microphone is at the top of the part of the hearing aid that goes behind my hear, so when my hair is down my hair covers the microphone.

This is what my right hearing aid looks like in my ear.

Hearing aids are expensive, and unfortunately they weren’t covered by my insurance.  However, they are worth every penny.  I’m so thrilled with them already.

Next week I will be getting an iCom, it’s a device that makes it possible for my hearing aids to be able to interface with a diverse range of communication systems like telephones, televisions, MP3 players, computers or other audio sources.  I can’t wait to see how different talking on the phone will be.  I’m still having a bit of trouble with that.  It’s possible, but not ideal.  With this device my phone will ring in my hearing aids, and I can answer it by clicking on device and I will hear my calls in both ears through a blue tooth.

I’ll let you know how it works after I’ve tried it for a little while.

Oh, the things I can hear!