Tag: hearing loss

Yes, it’s still my blog here….it has many personalities…or something. Plus update on symptoms, and Spring.

On By WendyIn Chronic Illness8 Comments

You may read my blog from your email, and haven’t even seen it….but if you have, you may have said…”she’s at it again!”

and yes I am….I just didn’t like it.  Too busy, and I didn’t like the page color.

So many things I can’t change on Word Press.

And I don’t have Photoshop right now, I’ve been trying to use Gimp…but I’m so lost with that program it were a real book I would have torn it to shreds by now.  Ugh!!!

This looks like me, trying to use Gimp.
(image source free clip art.)

I miss Photoshop, I need to buy it, but I need to buy a teacher or student version…I really can’t afford the off the rack price.  whew.  That’s like the difference between designer clothes and thrift store, for the same goods!  I just don’t get it!

So for now I wait.

Did you know on WordPress you have Pay to change the CSS on your blog?  You have to pay to change your font….yes thank you can get around that one by writing in Word then copying over, but not all fonts copy over right.  And I’m lazy.  I’m just shocked at all the things that are now considered “upgrades” that used to be free.  I know this is a commerce driven world, but it makes me sad when you start with something because it offers certain features free, then it changes.  And I’m sorry, I’m not paying $30 a year to be able to customize my blog.  Heck I can’t even do it, I’d have to get my hubby or my friend Vincent to do it.  And I’d only do it about once a year, tops. If I found the perfect look, I’d probably change very few things ever again!

OK….So, I hope you won’t think ill of me during this transition time.  I like the retro look.  I’m going to try to put little ants in the header, and that will probably be it for a while.  If I can get that done.

Symptom Update: My headaches, had decreased, but recently every time I go to sleep when I wake up I have a blinding headache, like a white light pierces my brain, the intensity doesn’t last for long…but the headache doesn’t go less than a category 6.  So I’m a bit icky most of the day.  But it’s better than it was!

Visual problems are better.  The one that has really stuck around is the…oh I don’t know how to describe it…not only can I not see white on black very well, the white looks gray, but black doesn’t look black-black.  It has this variable tone.  Everything looks a little off in tonal values.  Which is very odd for me.  But I can still tell what color is what, I’m not color blind!!  Yay!  I just can’t tell if they have white  or black added to them.

Very tired.  But not sure if it’s the disorder or the meds, both can cause it.

The Meniere’s has been staying away.  I think the surgery in December worked for that.  The hearing in my left ear, is still gone.  Right is more sloshy.  Had that hearing aid adjusted and I keep asking Stuart, “what’s that noise?”  and telling him to stop yelling at me.  Funny huh?  Now, which will come first, the cochlear implant of the shunt?  Each are inevitable, it’s just which one makes its requirement known first.  Of course, the shunt could be much more important for health reasons, but who knows how long the medication may work.  So much to consider, so much out of my hands.  (don’t you hate that?)

That’s all for today.  Hope everyone is enjoying the First Day of Spring.  (I don’t feel like we had a Winter.)  Everything is blooming at once, my allergies have gone mad!!

I should be saving these for next month.  : )

Awards – Versatile Blogger Award (again) and the Sunshine Award.

On By WendyIn Chronic Illness3 Comments

Recently, there have been a few fellow bloggers who felt I deserved an award, or two…

unfortunately, I have been remiss at acknowledging the compliment. Please do not think the honor has been felt any less deeply.  I simply have not had the time nor the stamina to do the honors justice.

Today I attempt to do so.

Each time someone feels that my blog touches them in some small way, and they pass an award my way, I get a tingle from my head to my toes, and a little tear in my eye.  Needless to say, I am touched very deeply.

Each award deserves an individual post, but I’m going to cheat a little and combine 2 in this post.  I hope they will not feel slighted, and you will not feel overwhelmed.

First an award I have received before – The Versatile Blogger Award.  On December 23, 2011, I posted about Mo from Day by Day with Addison girl honoring me with the Versatile Blogger Award, today I write to THANK the Bipolar Muse, and Fiona from The Agoraphobic Blog.  I’m honored these lovely ladies also felt that I deserved this award.  I must be a very Versatile Chick huh?  *giggle*  I hope no one minds, but since I followed all the ruled the first time, let’s say it covered all of the awards..please.  You see, I’m really not that interesting.  Plus, how much about me do you not already know.  Really??

So on to the next award.  The Sunshine Award.  Again, I’d like to say, I am very humbled and honored to receive an award.  To know my words have touched another.  Why else do we make our blogs public?  Fortunately the Bipolar Muse had been recognized a lot the past few months, and she has shared her honors with many of the bloggers who have touched her.  Thank you once again Bipolar Muse for thinking of me!!

Now for the duties for this award:

First step:
Thank the person that nominated you and in my case this is Bipolar Muse.  Done.  But I would like to say, her poetry is like silk that often slips through my fingers only to wrap around me in soft coolness to comfort me.  Sometimes, unsettling, but always honest.  Thinking of her, I came to the realization that Tears are the Elixir of the Muses.

Second step:
Share some tidbits about yourself….that you don’t know…ooooo, hard one…

Favorite color:
First thought YELLOW!  But I do like other colors, but yellow makes me happy.  I smile whenever I see it.  It is the happiest of all colors for me, and I appreciate, many, many colors!!

Favorite animal:
My animals.  Sandy Dog and Max the Cat.

Favorite number:
ummmm, 2 I think….or 7….I like the shape of those numbers, they are close to the same….and my birthday is 7 – 2

Favorite Non-Alcoholic Drink:
Water – then, Mandarin Orange Iced Tea Unsweetened.  It would only be better if I could get it without caffeine.

Facebook or Twitter:
A little Facebook, and even less Twitter, I’m not into social media.  Too sterile for me.

My Passion:
Hubby, Helping, Furry babies, in a way my blog – which leads back to helping….getting better…staying positive…learning more….LIFE

Favorite day of the week:
Any day I get to spend the whole day with my hubby.  No work, no chores for him.  Just us.  Not thinking about what needs to be done, or me being sick.

Favorite Flower:
Daisies, Sun Flowers, Black Eyed Susie’s,  Gerber Daisies, and Calla Lillie’s like I carried at my wedding.

I will pass the Sunshine Award on to the following blogs:

There are so many deserving blogs….those who put Sunshine in my Life!!  I decided to choose a few people who have really reached out to me lately since I have gotten this new diagnosis, (don’t think I have felt slighted by anyone, these people have made me laugh)  And one person who probably has no idea I exist.  I often miss her post because for some reason I can’t get WP to email updates to me, but she is special, and she is inspiring, and you should check her out!!  Especially if you have Meniere’s or hearing loss.

In no particular order:

Sunshine and Chaos  (she has sunshine in the name,  she had to get the award!)

Hearing Elmo (this woman is amazing! check out her blog. she has a Meniere’s, a cochlear implant, and a service dog…and the best attitude ever!)

The Agoraphobic Blog (Fiona will share tissue needed emails with me, and turn around and we’ll share silly poop songs!  And she just got MARRIED!  Thank you for the Shaky Dance.)

It has taken me at least 3 days to get this post together.  Please, no tears.  People keep telling me that my posts are making them cry.  Please do not cry.  We never know what is going to happen.  How things will end up.  I’m sure that I will be able to get through this.  I’m a pretty strong person, and I pretty darn resourceful.  Plus I have one more Award to talk about.

Don’t let this get you down.  Remember I have a great team of doctors.  Had the nerves checked in my eyes checked on Friday all is looking fine.  No damage.  We upped the medication. Today is a rough day, but the weather changed, and it’s hormone time….so it could just be normal migraines.  It just hurts, that’s what I know.  : )

Docs are learning a lot from me.  Who knows, they may be able to save someone else from going though so many tests and maybe they can find a new treatment because of me.  maybe, just maybe.  That would be nice.  I’ll be fine.  Yes, things will be different, but I will adapt, that’s what humans do.

*smile*

So, Don’t cry for me….and you have no idea how much I want to say “Argentina……  hahahaha

We’ll talk more later.

Under Pressure

On By WendyIn Chronic Illness17 Comments
http://blog.spacetec.org/2011/03/18/under-pressure/

A friend of mine, who is also going through having Idiopathic Intracranial Hypertention,because of her pregnancy.  (Hopefully, her’s will go away after the baby is delivered.) posted this on Facebook for me…..I thought you might like to see it, but truthfully, I had no idea how add a video to my blog.

Hhahahaha

So I asked one of my blogging buddies who puts videos on her WordPress blog all the time and is going to school for IT stuff.  (Thanks Fiona) I hope it worked!

(I must confess, I thought I’d already posted this before I got her instructions and you would have just gotten a link to the video.  Then I looked today, and there it still is, unpublished!  Ha!  How lucky!  Now you can see the video embedded in the blog.  It is very well done, and not terribly long, I hope you enjoy it.

I read something about Idiopathic Intracranial Hypertention last night, and I had a light bulb moment.  They used to call this, a pseudo tumor.  Because it acts like a tumor.  I heard that but it didn’t really sink in as to what it meant.  Then the doctor, who I was reading explained, it causes the same symptoms as a brain tumor.  I thought, “Oh Shit!”  This really isn’t good.  A friend of mine had a brain tumor, she really only had horrible headaches then they took it out through her nose!  She’s doing great now!  I thought….I’d rather have that.  (then I felt kind of guilty.  But…ummm, if her’s never comes back, she got off a bit easier don’t ya think?  I’m sure she’d agree, I know she would actually.)  I am such a bitch lately.  But I do love this friend, she has been a good friend to me through all of this and I didn’t mean I’d switch with her, I’d just like to have something easier to cure.  Or be able to cure at all!

But there are options, I’m in good hands.  Called Dr. Kaylie’s office today, well Stuart did. and he said if I needed a shunt I’d be getting an LP shunt.  Meaning it would be attached at the Lumbar Puncture site, not to my brain, so it would not interfere with the cochlear implant.  So I will never be completely deaf!  Whew!  One thing less to worry about.

Stuart also asked about disability, Dr. Kaylie said to just send him the paperwork.  My psych. said the same thing.  I think I might have a chance at this.  A vestibular specialist, a psychiatrist, a neruoradiologist, and a neurologist…and possibly an orthopedist all saying I can’t work.  Someone should listen.  But I was just looking at the paperwork, and it asked, what date I could no longer work.  Heck, I don’t know.  When I finally completely stopped working, it was because Stuart got a job in California.  I had gone from full-time to a part-time job where I only worked 15 -20 hours a week, and made my own hours.  I also went from being a Custom Picture Frame Shop Manager to merchandising greeting cards.  Because that was all I could do…and it hurt like hell.  I was already having trouble with my hip, and had to quit my framing job because of the Meniere’s.  So when we moved to CA, we decided I’d just pay attention to my health.  Then I was never able to go back to work.  I tried one Christmas to work in a retail store a couple of days a week.  I lasted 3 days and couldn’t stand after that for over a week.  I had surgery shortly after that.  So what date do I put down?  When could I no longer work….what magical date?  I kept trying and trying damn it!  Hell, just last year I worked for 1 week answering the phones for Stuart’s job, but I couldn’t even do that now.

Stuart’s ready to ask a lawyer to handle the whole thing, but that can get expensive can’t it?  I don’t even care about the money.  I just want to have the label.  That sounds kind of sick.  But there are advantages through the ADA and other organizations if I am officially declared disabled.  Plus, I need to accept it.  The money would be helpful. don’t get me wrong, but right now, there are more important reasons I need to have this done.

I have really begun to hate WordPress.

There is a button at the top of my screen, “Congratulations, you win the prize! The chance to take our 5 second survey : )”  so I clicked it….It asked if I would reccommend WordPress to my friends and family, I said 0 – Not on your life…it comes back saying I’m not an authorized user for this Dashboard.  What?  I’m using the Dashboard!  You )%(%*^&$.  I went to the Users tab, and I’m the only authorized user? What do they want?  That’s just strange.

I can’t get any Theme to look like I want.

They want me to PAY to change the size of my Font!  I didn’t realize this before, but now that I’m visually impaired, it makes a difference.  (and it’s killer to read white on black now, I see gray on Black and it’s very hard, I had to change my other blog.)  I feel horrible, some blogs I’ve been reading a long time, now, it’s so hard.  There are some I can still read, but I can’t read their side bars.  I guess that’s OK.  I used to love a black background.  Heck, my Create To Heal blog still has one.  But since the font is so big and a bit yellow I can still read it, but I may have to change it.

I want to say right now!!  IF ANYONE HAS ANY TROUBLE READING MY BLOGS, PLEASE LET ME KNOW.  I WILL GLADLY CHANGE THE COLOR AND (IF I CAN) THE FONT OR FONT SIZE)  I am writing to WordPress today about my concerns about the font sizes.  I do not like that I have to hit Control + to make my screen bigger so I can read my own blog!

I’m not happy with the look of my blog right now.

Not cute enough.

Not Wendy enough.

But I don’t want to change from Word Press, I’m afraid I will lose my followers…and those who are just now finding me through the WEGO Health Activist thingy.

what to do.

WordPress, really wants me to pay for everything.  I can’t do that.

*sad face*

I’ll figure out something.  I’m sure I will, I’ve come up with some kind of cute looks.  We’ll see.

Hope to surprise you with a new look soon!

Chrome and my WordPress blog are getting a divorce…or at least a separation.

On By WendyIn Chronic Illness14 Comments

**Warning before this is started….I am going to rant…most of it’s just me….some of it may be the fact that they changed my meds and I’ve been up and down A LOT for 2 days (6 vertigo attacks yesterday – much better today)  so, sit back and enjoy the ride…or just switch it off…or laugh at me…preferably all but turning me off!*

For some reason, a few weeks ago…or more, my blog has not been playing nice.  At least not when I was using Chrome.  I tried all the tricks I was advised to do…all about cookies and cacheing…and stuff…yes I will admit it I’m a  bit of a nerd but I am in no way a techie.  Well these things didn’t work.  So, Stuart and a techie reader (please feel free to take credit if you wish, I didn’t want to “out” you if you didn’t want me to), suggested I try to post from a different browser (yes, at first I looked a little dumb founded, but I’m blaming that on the medication, because I did figure that one out.  It did take a moment because Stuart said, try posting from IE….I said, “what?  You know I hate acronyms!” ‘Unless I make them up.” OK, he did have to tell me that IE is Internet Explorer…how dumb….wasn’t there some old sci-fi movie called something like that? – no that was AI – I was close. )   OK….I tried posting in Internet Explorer since it was already on my new computer.  Guess what, it worked just fine.  Well that just ticked me off.  Everything I do is Google based.  OH…then it hit me…almost everything I do is Google based!

Suddenly I felt that Big Brother had taken hold of me and I hadn’t noticed it.  Even my new phone is an Android….please can someone teach me how to use this darn thing?  I can’t even get it to sync with my Google Calendar!  Or do coupons!  Why else would I buy a phone?  I don’t talk on the phone!  I CAN’T talk on the phone!  I should get some use out of it!!  But that is another rant for another day.

Suddenly I was afraid that my readers who run Chrome weren’t able to see my blog correctly.  So I grabbed Stuart’s computer and went to my blog as if I was just a lurker, and no troubles.  Yay!  At least all you Chrome users who are reading my blog shouldn’t be having any troubles.

Another suggestion from a techie reader, try using Firefox to run my blog through.  So I am.  Right now.

Look, I can add tabs!  I can search! I can add photos!  I can do all kinds of things that I couldn’t do before.

I wrote WordPress, I didn’t get a reply…not even a reply saying, we’re sorry but the volume of email that we get means it will take a long time before we get back to you..or something like that.

Nothing.  I kind of understood..after all, I have a free account.  But for some reason I have a feeling if I had a paying account I wouldn’t have gotten much better service.  A week or so after the first email I went back to support to see if anyone else had reported a problem and to try to write them again.  I got a message that said, WordPress Support is closed until March 6th.  No reason, nothing.  Just try the forums.  It was at least a week before the 6th at the time, so I kind of wonder if I had a paid account would they have a special support team for me?  I don’t want to talk WordPress down.  They do a good job for a free service, and I personally know no one who has the paid version…or if I do we haven’t spoken of it.  I’d just like to know if they give more customer service to their paid accounts.

So for now…my WordPress Blog and Chrome will be parting company.

Firefox will be my browser for now.  I used to use Firefox all the time, then hubby suggested I use Chrome and so I did, now we’re both talking about going back to Mozilla…Firefox.

I may even put it on my phone.  However, I think my Smart Phone is smarter than me.

photo from http://www.techturning.in/2012_01_01_archive.html

 

I have much to post about.  More about my new diagnosis, my feelings, my crazy head…and just weird things about all of this.  Plus, I’ve received a couple of awards from some very generous bloggers!!!  I really need to take time to post an acknowledgement and pass them on.

I apologize if it takes me a little longer.  I’m still not feeling well.  I feel better for a little while, then awful for a while….then back again….it’s a crap shoot.  I’m trying to read as many blogs and emails as I can, and comment on some, but on any nice days where I feel nice, I’ve been taking advantage and getting out of the house, even if it’s just for 3o minutes.  But sometimes, that’s the only 3o minutes I have in a day.  (I used all my spoons)

Hope you are having a nice beginning to March!  I’m hoping to get a few little seedlings started soon…I wish I had already.  I want to at least have my herb garden again!  And the wild flowers. (maybe smaller ones this year.)

Love and Light to all!!  I do have much to talk about.  I hope we can all get a great discussion going about how we handle things when we think we’ve gotten everything handled and accepted, then something new happens.  I’m trying, but this is a rough one.

We’ll talk about it tomorrow if I can.

I’ve said it before, and I’ll probably say it again…what a difference a day can make.

On By WendyIn Chronic Illness6 Comments

Today was a breath-taking beautiful day.  The sun was shining, it was in the 80’s F….yes the 80’s on the first day of March!  A good friend of mine just got married!  I’m so very thrilled for her, you may remember me passing along the candle lighter award to her….Congratulations Fiona and Jeremy…I adore you!

I slept longer than I have in a long time, I woke up with a minimal headache (my normal every day type of headache).  I was still seeing double but it didn’t seem to last as long.  I lounged in bed for a while with the window open and enjoyed my breakfast.  Then I read a bit on the computer and decided to get dressed for the day.  We were refinancing out house to a better rate, and we had to sign all the papers at the lawyer’s today, so I had places to go.  I decided to start getting ready very early.  About 2 1/2 hours early.  Just in case.  I wanted to do a little then rest, do a little more, rest…eat lunch….rest….you get the idea.

You would be so proud of me…I know I was.  Darn I should have gotten a picture!!  I French braided my hair.  I’ve never been able to do that!  It has always turned out lopsided or with straggling hairs, but usually it is a “Dutch” braid.  A French braid lies flat against your head the Dutch braid is kind of backward, it looks like a braid stuck to your head….it sticks out.  It’s kind of neat, but not what I wanted.  And…imagine this, I did it on the FIRST try!!

I tried on a few things to wear, but the one’s that I don’t look like a blimp in were too hot, I admit I was getting sad and upset.  Then I thought of a white tank top with an orange cap sleeved sweater over it that has one button around the abdomen that makes me look much thinner.  I actually put on makeup!!  I got ready, got dressed, and got down stairs….all by myself.  I was beaming with pride.

Stuart and I decided if I felt well enough after our visit to the lawyer we would have a date night and go to Fishmonger’s.   I LOVE crab legs.  I know he just got them for me on Valentine’s day…but it was so nice to have a date night with my hubby.  In a restaurant right across the street from where we met.

Fishmonger’s is one of those little seafood restaurants that make you feel like you are on the Carolina Coast.

This is the type of tables they have there.

I am having a very hard time with my hearing.  Stuart needs to step up his ASL practice.  On average I have to ask someone to repeat themselves at least 3 times, and after that I just drop it.  It’s too embarrassing.  And it’s usually just some small talk.  I can’t remember if I’ve mentioned it here, and I’m too tired to look back and finish this so I’ll give you the short version.  Saw Audiologist on Monday.  She thinks I’ll need a cochlear implant soon but the requirements change with insurance companies.  We have new insurance starting this months.  (they are going to love this) The first question Stuart is going to call and ask is what

their criteria is for covering a cochlear implant? The surgery cost between $30,000 and $100,000 and our out-of-pocket will be $150 Yay!!!

So I may have told you…forgive me.

So while we were out, it came time for my medication. All of a sudden I had a sharp pain in my head, I asked what time it was, exactly time for my medication! I asked if we happened to remember….ooops, nope. So I was 2 hours late taking it. By the time I got home, I was not able to walk unaided, I was slurring my words, I had to really concentrate to understand things…..it’s kind of funny, in a way I feel like I’ve taken some drug…like a downer or something. But it’s all being caused because I missed my medication. Ahhhh!

Right now I’m running a fever again. Every night, only at night. Strange huh? I take some Tylenol it goes away.

I still have a lot fo figure out with all of this, and it will take some time. It is apparent that I’m getting better with the side effects and I’ll probably get even better when I get some potassium (Diamox is known to deplete potassium.) I have been trying to eat a banana a day, but it’s hard when that’s the cap on the amount of fruit I can eat in one day. So we went to buy some and the store was out. How rude!

I’ve been watching these cooking shows and now I’m just dying to cook. But I need to be more steady on my feet for that. Perhaps I see some slow cooker meals in the future. (much less dangerous, I can just instruct Stuart.) I bought some herbs recently, and got a free ounce of Saffron….oh….what will I do with this delectable spice?

Also, if you have never heard of or tried Pot Herb – it is a mixture of Chives, Chervil, Parsley, Thyme, Marjoram, and Bay leaves. This was delectable in Chicken Soup..and just on chicken….I can imagine so many things to do with this blend…why have I never heard of this french blend of spices before?

So…

What a difference a day can make. Do I feel this much better from all the well wishes? The joyous feelings I have for my friend? The fact that the Topamax was uped? The beautiful weather (you know I got to take the top off!!), or have I once again, simply decided enough. I can’t stand to live with you like that! Get up! Pick yourself up…even if you need help, and find something that satisfies you. even something small…and build it up again.

That’s why I say those silly expectations I had for this life…they must be fluid now, and change as I do.

Thank you all for believing in me.

 

 

How about a little W(h)ine?

On By WendyIn Chronic Illness9 Comments
A little W(h)ine anyone? photo from dreamstime.com free collection

Today I shall do something I very rarely do…I’m going to Whine!

(and take note, I don’t feel well, so I haven’t read over this post…it’s probably full of errors. Feel free to whine about it!)

I am trying to keep my normal positive, can do attitude, and I promise it’s here, but I feel so overwhelmed, I just need to whine for a little while.

So anybody in for a little pity party?  Plenty of W(h)ine will be served!

If you’ve read my previous posts you know I started having extreme “slosh” head on Friday, February 3rd.  Today is the 9th.  Since this began I’ve woken up with vertigo 5 days!  That is the absolute worst feeling.  I have no chance of taking the medications to perhaps stop it because I’m already spinning.  Ugh!  I do think the meds have helped make the attacks much shorter though. Yay!

I “spoke” with Dr. Kaylie today.  Really I emailed him.  I got very upset when he emailed me back and said that these questions had to go through the nurses so I needed to call in the future….this after I just said in the email that I would have called but I can’t hear on the phone and Stuart hasn’t had time.  Ahhh! I felt like…OK, you are my ear doctor you know I can’t hear…after the mess with the ASL class I just broke down and sobbed.  I wrote him back that I would never email him again, and he could have told me that before.  yes, I was a bit abrupt.  Then I proceeded to write him a formal letter telling him how I didn’t feel like I was being respected…I started to send a copy of the letter to my therapist for her feedback when I got another email from Dr. Kaylie, saying I had been no bother, and it is easier for him to get the email directly but there have been new rules and regulations put in place that they have to follow.  Well, take the wind out of my anger.  I’m still a bit miffed, but I need to be aware, he’s a very busy doctor and I’m probably overly sensitive especially right now.

In the original email he said I should probably talk to Dr. Gray about getting another LP to test my pressure.  And he wants me in to see Dr. Atkins (the neurologist that specializes in headaches), ASAP.  So Stuart will be calling Dr. Gray’s office to see about another puncture, and calling Dr. Atkins office to see about getting on a cancellation list.

Ok, that wasn’t too much whining…

but I just feel so beat down.  Every time I think I’m getting a bit better….shit hits the fan.  Unfortunately, sometimes more literally than others.

I did have another yucky bowel thing go on today.  I woke up feeling a bit better today…not spinning first thing.  But still slosh head and simply not feeling great.  So I decided I’d rest today.  (as if I could do much more).  So I’m on my computer and I feel the need to go to the bathroom, nothing urgent.  I like to play solitaire on my Kindle when I’m in the potty.  When I walked in the bathroom…about 5 feet from my bedside, I noticed my Kindle wasn’t there, I walked back to the bed to get it and all of a sudden I no longer simply needed to go to the bathroom….I needed to be in there NOW!  So I ran back, and I felt it was coming out….I started pulling down everything and right before I got my butt on the toilet there was a big SPLASH!  Just one second sooner and I would have been covered in crap.  I was still in there a while, so it was far from over, but I think I’ll be listening to those slight little feelings that say…hey you need to go to the bathroom sometime….knowing they mean…Get your Butt in the Bathroom NOW or you are going to be very embarrassed!

My emotions were so raw today, my physical self isn’t cooperating with me, and I almost crapped myself.   Stuart said, “it can’t get much worse”.  I was startled and said, “Oh yes it can!  and I have to always remember that!  I could be worse.”  (maybe he just said that for me to remember that..either way it worked.)

So after a long day of mental exhaustion, hours of crying,and head pounding I’m ready to say: I give up for the day.  As Scarlett O’Hara said “Tomorrow I’ll think of some way . . . after all, tomorrow is another day.”  But tonight…I will rest!

And my darling husband has gone to get me Vietnamese Chicken Salad Rolls from PeiWei.  I’m a lucky girl.

Of course, he may be doing this because Penelope is back in the hospital…hopefully not for long, they have to control her headaches.  So her husband isn’t cooking.  He has been a wonder to have here.  He’s been cooking nearly every night.  Good food, and good for you!    Unfortunately, Stuart hates to cook.  He’s good at eggs, frozen pizza, and macaroni and cheese.  He’s actually a pretty decent cook when he wants to, but he hates it really.  And after a long day of caring for me and working….I don’t blame him a bit!

He may also be doing it because I insisted on cooking some last night…at least help by doing part of it.  It was the second time this week I almost caught the house on fire!  This time I set a dish cloth on fire!!  A few days ago I thought I turned a pan off and turned it all the way as high as it would go!  The house smelled for a couple of days!  Ruined my favorite pan!

So I’m not allowed to cook at all until I’m not slosh headed any longer!!  I know, I thought I could do it…and I’m normally pretty good at figuring out what I can do.  Plus, cooking last night Stuart was right there cooking too….glad he saw the flame!  *an embarrassed little giggle*.

May we all feel as well as we possibly can!

 

4 days on a Merry-Go-Round and counting

On By WendyIn Chronic Illness7 Comments

The title sounds like I’m going for a world record or something huh?  How many days can you stay on a Merry-Go-Round.   Hopefully, I’ll be getting off soon!

Funny, I used to love riding a carousel! I'm on the left, my friend Jenn is on the right.

Today is day 4 of slosh head and vertigo attacks.  I was awakened again this morning with the sensation that I was moving.  I took my mediation, and headed to the bathroom, hoping I could at least pee before the spinning started.  As I was leaving the bathroom I called out to Stuart, he woke up and I said in a sing-song voice, “It’s Back!”   He jumped out of bed, boy that man can move fast when he needs to.  I’d made my way to the bed with my walker, when I let go of the walker and started to sit on the bed it felt like someone pushed me down!  If I’m going to have a drop attack I’m glad I was already falling toward the bed!

I was in full spin at this point.  Phenergan suppository time.  I noticed the day before that staring at a fixed spot on the wall was not working, it just started moving and my eyes followed.  This morning I started staring at something on my night stand, about 1 foot away, and closed one eye…this really helped.  But I was so sick, the heat was engulfing me.  The diarrhea started first.  Then the vomiting.  Luckily neither lasted long, but I feel like crap.  My head hurts, I do not feel steady enough to walk unassisted.  I’m so very tired, but can’t seem to sleep more than one hour at a time.

I weighed myself our of curiosity.  I’ve lost over 5 pounds in the past few days.  I promise I am staying hydrated and I am eating.

I emailed Dr. Kaylie just to let him know how different things are since I saw him just one week ago.  Just a FYI, so he is aware.  He wrote back, thanked me for the update and so sorry I am feeling bad.  I know he wishes he could do more.

Stuart has a theory…and I’m wondering if he’s right.  He thinks perhaps my pressure has built up again, and I just had a “blow out”.  That would definitely cause these symptoms.   But right now I don’t know what they could do about it.

Stuart talked to the ASL teacher and he said she sounded very apologetic and concerned.  She understands my frustration but doesn’t know how to fix the situation.  She said later the class does go to non-speaking, but I think by that time I’d be so far behind I would be lost.  She admitted this class is set up more like a foreign language class and not a class for the deaf.  We are going to look into a refund tomorrow.

Someone sent me links to a few on-line tutors who she worked with, and we think we will check them out.  (thank you Antonia)

So that’s if for today.

Not a great way to celebrate Stuart’s Birthday!  Him taking care of me….once again wiping my ass, holding my head as I throw up, cleaning every thing up, helping me to and from the bathroom, feeding me…..and he’s been working today and did some laundry.  This Superman deserved a nice birthday.  Luckily I gave him his gifts early.  One I had to because he was about to buy it!  The other, he got a massage at home yesterday…it was supposed to be a surprise, but he decided he was going to give that to himself…after I’d already had it set up for over a month!  Going out to dinner is on hold.  No cake.  I wish I could have doted on him or a change.  I’ll make it up to him. *wink*

3 in 1 – 3 mini posts, I need to catch up!

On By WendyIn Chronic Illness4 Comments

I don’t know what happened with this post, I thought I posted it a couple of days ago.

I just realized it was never published!

A little anti-climatic after my last post…but just imagine you read this one first.  : )

1 – WEGO Health Award Winners

Be sure to check out the WEGO Health Award Winners!  You can find the winners with links on WEGO Health on Facebook or on the WEGO Health Blog Post.  Keep watching these sites for more information about the 2012 Health Awards.  This was WEGO Health’s first Health Activist Awards and they would like your input to help make them even better, you can take a quick poll here http://4159395.polldaddy.com/s/tell-us-what-you-thought-of-2011-health-activist-awards.  I am thrilled that I was chosen as a finalist for the TMI Health Activist Award.  There were many nominations for each category, I hope you took the time to nominate your favorite blogs.  Everyone who is a Health Activist should be proud of what they accomplish.  You make a difference!

Brain MRI - photo from http://www.eldr.com

2 – Monday, January 30th…a day at Duke.

On Monday I had 3 appointments at Duke Medical Center. 12:15 pm Clinic 1D have blood tests.  Since this is a mini-post I will not go into detail about how odd the technician was, and how very painful the procedure was, needless to say, it wasn’t the best experience.  (who takes blood from a person’s hand?  Without even looking for a vein elsewhere?  And fishes around under the skin for the vein?)  Yes, not a goo experience.

1:30pm Lennox Baker Center (located about 2 or 3 miles from the clinics) for Brain MRI with Contrast.  The first person we encountered there was very confusing to me.  I kept getting confused as to what I was supposed to do next, I told him I couldn’t hear, but he just seemed to get frustrated with me…glad I had Stuart with me to help (but he got a bit confused too, so it wasn’t just the hearing issue).  I got an IV for the contrast dye, I have a huge black bruise from this, but it didn’t hurt nearly as bad as the blood test I had earlier.  The MRI itself was pretty easy, much easier now that I can’t hear the extremely loud noises that it makes.  (I also took a Valium before going, so it was much less stressful!)  When the technician took me back to Stuart, he just held the door to the waiting room and left.  Stuart wasn’t there.  I didn’t have my hearing aid.  I asked the people in the waiting room if they had seen another man, and asked them just to shake their heads because I can’t hear.  Everyone said NO…yes, I began to panic a little.  I’ve never been put in that type of situation before.  I couldn’t hear what anyone was saying, and I had no on there who knew me who could help me.  I went back to where we checked in, and Stuart was in that waiting room.  They told him that’s where they would bring me back to.  It was only a bit of a panic for a moment, but once again I’m reminded of how much I must depend on my husband.

Lunch – 2:45 – 3:10 Chipotle – There was really only one faster type place we could stop on the way back to the clinics for my next appointment.  We stopped at Chipotle.  I used to love this place, and I thought I was being very cautious when I ordered.  I had the grilled chicken tacos (no onions or gluten!)  Then I got some guacamole…I love their guacamole.  I didn’t realize until I’d eaten about 2 tablespoons of it that it has red onion in it.  My stomach bloated to such an extreme my loose top was very tight around my tummy, I really looked like I was pregnant!  I had the worst heart burn.  I was not a happy girl…but lunch tasted really good!

3:30 Duke Clinics – Dr. Kaylie’s office – As expected, my MRI was clear.  No brain tumor, a little fluid still around the surgery site, but that was to be expected, it will dissipate over time.  The greatest adventure we had at his office was with the Blood Pressure machine.  First they couldn’t get it to read my BP, then the BP cuff actually blew off!  She fixed it up, and then she took my BP again…it was 175/113!  They told me I couldn’t leave.  The nurse started asking me questions, was I light headed, did I have a headache….I mentioned I had heart burn, she started to look worried and asked if I had pain in my jaw.  I thought…oh great they think I’m having a heart attack!  I explained I had heartburn because I’d just accidentally eaten onions.   She decided to try a different machine, again, after numerous tries it wouldn’t take my BP.  We decided to rest for a bit and try again.  Third machine, finally read my BP 145/92 – yes still a bit high, but after what I’d just been through it was understandable, and Dr. Kaylie said I was OK to leave.  Whew!  I hope my blood pressure is normal next time I go to the doctor, I don’t want to go through that again.

This is a close example of what my new glasses look like.

3- New Glasses

After my appointments at Duke we went and picked up my new glasses.  I was so excited, looking forward to seeing clearer, the frames that would fit better with my hearing aid, the lighter material, and the new look.  I put them on and looked in the mirror and didn’t really like the look.  I’ll get used to it.  (I think most of it has to do with my face being so much rounder.  I’m just not fond of that look!)  In the office I thought I could see fine.  On the ride home I realized I couldn’t read the street signs.  Then yesterday while at class I realized I was having a very hard time going from distance seeing to seeing close up.  Oh great!  My optometrist and I discussed what I do and how I need to see.  She told me that the glasses I have now are single vision lenses., not bifocals.  So I decided to get two pair of glasses, one that is just single vision, and one that are called “computer progressives”.  They will help my vision seeing the computer and reading up close.   After examining the glasses I have now, I realized that they are in fact bifocals.  I’m not sure I would have added the extra expense of the second pair if I’d know this.  I’m usually very frugal about how much money I spend on glasses, but I was so unhappy with the last pair we decided to get the “perfect pair”.  Now for the beginning of trying to get these glasses fixed.  *sigh*

So there we go, 3 short versions of things I wanted to say….unfortunately, I still have much I want to post about.  Receiving the Candle Lighter Award and passing it on…a link to a post about being positive featuring me, and my day yesterday….so much I want to share, you may get tired of hearing from me.

The Good, The Bad, and The Ugly – all in just a few days.

On By WendyIn Chronic Illness26 Comments

This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….

The Good

On Thursday it was a beautiful day.  The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February.   I decided to take a drive for the first time since June.  I haven’t had vertigo for over a month so why not?  I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road.  The top was down in my little car, and I had a blast!  What a milestone!!

Not so good – we went to our ASL (American Sign Language) class Thursday night.  This was our second class. I’m not sure I’ll go back.  I keep telling the teacher and the students I’m hard of hearing.  I’m so very lost in the class because i can’t hear what’s going on.  If Stuart tries to tell me what I’ve missed then he misses something.  I was so upset, I teared up 3 times, and came very close to just walking out.  To explain some of my frustration,, we have exercises where we each say things in sign language.  Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language.  (note, this is just one example).  I do not see how I’m going to get anything out of this class.  Stuart is going to write the teacher.  One huge problem, they allowed too many people in the class.  So there are 16 people in there and I’m the only one who is hard of hearing.  I feel so isolated and sad.  The one place I thought would be more understanding, and help me, is simply ignoring my needs.

The Bad

Friday I had slosh head all day, and was afraid I was catching a cold.  The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I   wasn’t that worried about it.  Probably just barometric pressure change and allergies.  Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining.  We decided to go out and do some things.  When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around.  I tried to brush it off as a little disequilibrium but couldn’t.  We went to the little cafe they have so I could get something to drink and take my pills.  I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor.  We hurried and bought our little bit of groceries and headed home.  Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to.  I then took another Valium.  I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car!  Wonders upon wonders it worked.  When we got home I was still pretty off but I knew the worst was not going to happen.

The Ugly

** some of the following may be too graphic for some readers.

Today I was just waking up and stretching when I felt my husband kissed me.  A pretty nice way to wake up huh?  The first thing I really noticed was how loud the tinnitus was.  My head was still a bit sloshy, and today it was also screaming at me.  Since I was a bit off, Stuart made me some breakfast and brought it up to me.  (oh, I have to admit he does this a lot any way…what a guy!).  After breakfast I felt exhausted and thought perhaps I should sleep a bit more.  I put my sleep mask on and started to doze, suddenly I felt like I was moving.  Stuart walked in the room and I told him, he grabbed me some pills.  I had to go to the bathroom.  He helped me there and left, but I ended up having to call for him to help me.  I couldn’t stand, pull up my undies, or anything.  He rushed in and helped me and nearly carried me to the bed.  By then I was in full spin.  I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository.  *ick*

I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment.   I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting.  Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not.  I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do?  I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.

My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head.  So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded!  Oh my gosh, I had no idea that was going to happen.  Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more.  This was gross.  I was so embarrassed and just completely grossed out.   I kept apologizing and crying a bit.  After that ended, the vertigo started to subside.

Stuart was so wonderful.  He told me he’d much rather deal with the bed pan situation, than for me to throw up.  He said it’s so much easier on my body.  And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale.  I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better.  He’s very right though, the vomiting is terrifying, and much more painful.  So I’ll swallow the embarrassment I guess.

I’m still slosh headed, and feeling a bit wonky.  I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.

 

When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.”  Very stoic of me, holding it all together.  However, once we were in the car and on the way home, I broke down.  I thought about how I drove just 2 days earlier, what if this had happened then?  I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop.  What if I had been alone?  I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.

Even more reason to live every day as it comes!  I do not regret my drive, and I wasn’t far from home.  If I had gotten sick, I would have pulled the car off the road and called for help.  I would have handled it!  If I had been at the store alone…well, that would have been more difficult.  I probably would have taken my pills and left the groceries.  Gone to the car and called for help.  I’d rather be alone in my car dealing with this than in a public place.  I may worry, but I’m confident if the worst happens I will be able to handle it.

Good Days, Wonky Days, and Great News

On By WendyIn Chronic Illness13 Comments

What shall I start with…  How about the GREAT NEWS!

Stuart accepted a job yesterday.  He had two companies make offers and it was hard to choose between them, but he chose the job that allows him to telecommute.  I believe his title is Senior Software Engineer at MEDSEEK.  (he’s been working with the medical industry for a long time and enjoys it.  Hopefully, he will be very happy in this new position.)  We’re excited!  He starts on the 23rd.

Also good news, Stuart’s sister had her second child today….well technically yesterday.  He will be sharing the same birthday as my sister.  (I hope that doesn’t jinx him, at least I’ll never forget it!)  His name is Johnathan David…after his grandfathers.  Looking forward to pictures.

I’ve had some good days, today was a pretty decent day.  We got out of the house, and went grocery shopping.  Yes, I was excited about that!  I cooked a great meal a couple of nights ago, and am looking forward to cooking more often.

However, I’ve had some Wonky Slosh Head days too.  The 11th…not a good day.  It was overcast or raining all day, and my head felt like it was full of goop, and my brain was sloshing around inside of it.  For the first time in weeks, I felt I needed help walking.

Today, I had the strangest tinnitus.  I always have some sounds, and at times they can get pretty obnoxious and just odd, but this time I could feel it.  What comes to mind is the poem, “I heard a Fly Buzz” by Emily Dickinson, luckily I wasn’t dying.  However, I could also feel the thing in my ear.  The vibration was so annoying…and dang it all…strange.  I sincerely hope I do not have that sensation again.

My hearing, is also strange.  The ear I had operated on in December had 0% word recognition in November.  Now it’s fluctuating, a lot!  Sometimes I hear nothing out of that ear, sometimes I can hear Stuart talking when I don’t have my hearing aid in the other ear.  And I promise I’m not hearing out of that ear!  Speaking of that ear, I think my hearing is dropping and/or simply getting more distorted.

the sign for ASL (American Sign Language) - photo from Lee Clarion University where ASL counts as a Foreign Language Credit

I’m so happy we are starting our ASL classes in 2 weeks.  I really need a back-up way to communicate.

I have a question, for those of you with Meniere’s.  How many of you were told you would have “burn out”?  I learned today, from a hearing loss specialist, that they no longer believe burn out happens.  I’m involved in an email group from The Say What Club (SWC), they have a few groups for people who are Deaf or Hard of Hearing.  I’m a member of the Meniere’s Group.  Everyone on there has some pretty profound hearing loss.  I’ve found that a few on the board are a bit older than I am.  I know one man is 76.  No one has experience “burn out”.  Only one member has no vertigo any longer, and he had Streptomycin injections, so he had no balance center.

On another note, there are a few on there who have Cochlear Implants, and love them, they say they are they are much clearer than hearing aids!  I’m beginning to look forward to the time when I can get one.  Then I think, I may just want to embrace the deaf world.  I’ve been pretty conflicted.  Then I thought, why do I have to choose?  I think I’ll probably do a bit of both.  If I can get a CI, I probably will.  But I want to know ASL and be involved in the deaf community too.  You never know when technology may fail.

Coming soon…learn all about a different part of my life.  Bipolar I Disorder and Me.