Category: Meniere’s Disease

I can’t believe it’s been so long…..

On By WendyIn Chronic Illness, Meniere's Disease5 Comments

There is so much to tell, where do I start?

I think I’ll just make a list of things that have been going on, then I’ll expand on them later….with some pictures.

First, the day after I wrote my last post be got a Foster Puppy.  (that’s why I promised the next post would be happier.)  For 2 weeks, we have the love of a 5 month old lab/Shepherd mix…this is a big puppy.  But he was adorable, and we loved spending the time with him, fortunately Max (our cat) did not share our enthusiasm.   I’ll write more about that later.

Then I had a migraine that lasted for 5 days without letting up, my meds would take the edge off a little, but not much.  I spent those 5 days in our bedroom with blankets on the windows, and the doors closed.  Most of the time I also had my hearing devices off.  The light and sound was so unbearable.   I really hate have hormone headaches.  And this month was horrible.  The cramps, the ….well you know what happens during that time of the month, but I will say, this was one of the heaviest periods I’ve ever had.  I’ve heard that some women right before they start menopause they have worse periods.  But I really don’t know about that.  I need to look up much more about menopause.

Hearing with my CI is getting better.  Stuart and I went to a restaurant that I can never hear in, and I heard the waitress, I ordered for myself!  I carried on a conversation!  This are still a bit distorted, but I’m beginning to tell male voices from female.  Some things sound as they should.   More on this later.

Tonight my hubby made homemade chicken soup for me, can you guess why?  That’s right, I woke up in the middle of the night last night with a cold.  I can’t remember the last time I’ve sneezed so much, and where does all this stuff that’s coming out of my nose come from?  Ick!  (btw, that’s not a serious question)

I probably have more to tell, but my head is hurting too much now.  And I should try to get some rest….and some tea…oh yes, some tea will make it better.

The chicken soup was AWESOME!  if you’d like the recipe you can find it here: http://wendycooks.wordpress.com/2012/04/15/the-best-chicken-soup-ive-ever-eaten/
Stuart did change one thing.  We just made a huge pot of Chicken Stock, much richer than the broth the recipe makes, so he used that for the liquid.   Sure is funny how chicken soup can make a cold sufferer feel so much better.

 

 

It’s been a very rough week.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

It has been a very hard week.  I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again.  I’ve been contemplating all week simply closing my blog and disappearing, or making it private.  But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too.  Plus I need a place to go and just get it out.  Even when I can’t talk about all of it.  Let’s just say, it’s settled for now….maybe.

Photo by Vincent Morrison – Manipulated by Wendy Holcombe
If photos could show feelings…

On the 15th, I got hit with a huge stessor!   I was under extreme stress and confusion for hours.  Finally, things were calming down.  I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all.  I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert.  It is delicious.  Well, what I got to eat of it.  Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar.  (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin!  This was one of the longest attacks I’ve ever had….and one of the strangest.  It was Meniere’s, not vertigo caused by a migraine.  I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then.  It’s getting better, but I was afraid I had broken it the next day.)  Again, all the throwing up and losing all bodily functions.  Not being able to lift my head, except to put it in a bucket.  (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)

So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again!  This went on for over 16 hours.  Luckily I didn’t throw up the whole time, I did keep heaving though.  Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet.  This often happens to me when I have an attack, at he beginning at least, I can’t figure out why.  Why does it have to hurt so bad??

Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight.  It was a very rough 2 days.

On Friday I had an appointment with my headache pain specialist (neurologist).  I was supposed to get Botox shots for my migraines.  Many people have had good results from this procedure.  I was a bit nervous, they do 31 shots in your head and neck/shoulder area.  Alas, I did not get it done.  Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either.  Just like with the Cochlear Implant.  What a pain in the butt that was.  Luckily, they did pay for most of it.  They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right.  Can you believe?  What if they hadn’t tested it, and later found out part of it wasn’t working?  I’d have to go through another surgery to replace it.  How bizarre.  Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it.  So now I have to get another appointment with this doctor…..hope it’s soon.

Sunday I had another scare. but not with vertigo.  Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary.  I had heart palpitations.  I figured out why, but it lasted a long time.  I wasn’t as careful Sunday about what I ate or drank.  I do not drink caffeine very often, and if I do, it’s just a little bit.  I also don’t eat much sugar.  Well…I wasn’t so bright on Sunday.  We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine.  That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar.  I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose.  I only drank about half of the soda.  After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too.  Not bright.  I only had about half a cup, but it was enough.  I started feeling strange.  I thought my blood sugar had dropped, so I ate some protein. But it didn’t work.  I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest.  The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist.  Well I did both, for a long time.  This lasted longer than I was comfortable with.  Finally, things slowed down….and all was alright.

I hate how much I have to watch everything I put in my mouth.  It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard!  I’m dealing with it, and I’m lucky I can eat as much as I can…right?  I just need to be more diligent.

 

Well that’s all for this past week.

I promise my next post will be on a happier note.

A Day of Wonders (Cochlear Implant activation)

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease10 Comments

Tuesday, July 31st, I woke up to this beautiful site:

Tulips from my hubby! What a wonderful surprise!!

I had an appointment with Dr. Kaylie to check my incision at 1pm, and then I saw the audiologist immediately afterward.

Dr. Kaylie was pleased that I didn’t have as much pain or vertigo with this surgery.  The incision looked great, and all was a go for activation….well, to get my processor.  Dr. Kaylie already checked to make sure the Implant was working when I was in surgery, so that wasn’t a worry.  The implant was already working, but I couldn’t hear anything without the processor.  It was time to get the processor.  So off to see Sara, my audiologist.

It was very interesting to have the processor hooked up.  At first I just heard a series of beeps, (that’s what I was supposed to hear).  She was determining the volume each frequency should be. Then I was able to hear speech, and when I first heard her talk I busted out laughing!  She sounded like a cartoon, then I heard Stuart speak, and he sounded like a cartoon…heck, I sounded like a cartoon.  I kept giggling every time someone spoke. Everyone still sounds cartoonish.  A very silly cartoon, like on Rodger Rabbit.  It’s amusing but also quite difficult.  Sara reassured me that all of her patients tell her that it gets better, but everyone is different.  My brain has to be trained to hear a different way.  Now I’m not hearing as a normal person, I’m hearing by having my auditory nerve stimulated.  That kind of blows my mind. (I know my hearing will get better and better as time goes on, but I also know I may never hear like normal ears hear any longer.)

You would not believe how much stuff I got with my processors. Two HUGE boxes full of stuff.

These are the boxes all the parts came in. The coffee cup is in the picture to show scale. It’s a regular sized coffee mug.
This is some of the pieces for the Harmony processor. Yes lot’s of extra stuff. I’m so confused by how I’m going to organize all of this stuff….just look there’s even more in the next box…and this doesn’t include things I’m using, like the processor, and the battery chargers…ect.
This is some of the items that came with the Neptune processor. This is the processor that can be waterproof, and it clips on instead of going behind the ear….but all this stuff, I have to figure a way to organize it, and understand it all. : )

I was joking in the last picture, I was shown what everything did, I just need to work with everything to make sure I understand how it works without anyone telling me, or me having to look it up.  Especially all the connections to hook the processor straight up to the iPod, or things like that.  The different ear hooks for different things with the Harmony.  All the accessories just to make it different looking and some to clip the Neptune on to me, like an arm band and a lanyard…ect.
I have a drying box to keep the processors free of dampness.  Each processor came with one, but I like one better than the other.  There are different carrying cases, but neither will help organize all the pieces.  I feel like I got some very useful items, some fun items, and some useless items.  But it’s been like Christmas for a couple of days just playing around with all the pieces and figuring out how to wear them.

Here’s some photos of me with my CI hooked up with the different processors :

Me with the Harmony processor on….I was playing around with the different colored pieces you can snap on to it. The part that hooks to my head….by a magnet…that’s green, I have that in white, black, red, brown, and light brown….and of course lime green. Where the blue is, I have some funky snap on parts there, they are all silly – stars, rockets, rainbows…ect. Or I don’t have to wear one and it will be a light brownish beige.
This is the Harmony from the side. I have the larger battery on the processor in this photo, so the back part (where the blue is snapped on) is longer than it is with the smaller battery. Of course the larger battery last longer than the shorter one….about 4-5 hours longer I think.
This is me with the Neptune on. I just clipped it to my shirt to show what it looks like. When it is waterproof, it’s actually smaller (you take the controller off, so you can’t change the volume or anything when you are swimming, but who would have time?)
Please excuse the way I look. No makeup, in a sloppy t-shirt…and taking photos of myself. How atrocious! haha

So there you have it.  Me and my Cochlear Implant with the 2 processors I picked out.

Remember, picking out a processor is a very personal thing.  I would never say mine is the best, if you are getting a cochlear implant, do as I did, read up as much as you can on all the ones available, then decide which one will fit in you the best.

Also.  Everyone has different experiences with their CI.  I’m hearing words, some people do not hear words when it is first turned on.  Others hear words that are much clearer than what I am hearing.  Some of it depends on how long you have been deaf, I don’t know the other factors…I just know we are different.  So don’t think my experience is the same experience you will have.

The wonders continue!

OH….I did hear my cat purr last night, and it sounded like purring!  I was thrilled!  The one sound I’ve had a hard time getting used to is my own breath.  I feel that’s strange….hopefully I’ll get used to it soon.  Breathing shouldn’t be this loud….should it?  I’m sure it’s something that will end up just going into the background.  I remember when I got my hearing aids the sound of my hair brushing against them drove me crazy….later I didn’t even notice it.

Photo Op! Cochlear Implant

On By WendyIn Chronic Illness, Cochlear Implant9 Comments
Getting Prepped for Surgery. (photo by Stuart Holcombe)
My Surgeon’s Signature. Marking which ear they will be operating on. (photo by Stuart Holcombe)
I’m a FALL RISK! When you have Meniere’s as a diagnosis, you are pretty much so labeled a FALL RISK. Funny, I don’t really see where they do anything different. I did get an escort to the bathroom, but if I had fallen, she wouldn’t have been able to hold me up! I think I’ll keep the bracelet and just keep putting it on when I go to Duke, no sense in wasting them. : ) (photo by Stuart Holcombe)
At home, tucked in my bed with Monkey after surgery. Sorry photo is a bit dark, but I didn’t have time to adjust it.
photo by, Stuart Holcombe
Taken 7/23/2012 – The oily part and yellow part is the stuff they put on the protect the wound until it has healed enough….I get to wash my hair on Thursday. I do not have any stitches to take out, all will dissolve. (photo by Stuart Holcombe)
Another view of incision. It was hard to get my hair in this position to show how much was shaved. It is very easily covered up.
photo by Stuart Holcombe

Surgery went “Perfect”

On By WendyIn Chronic Illness, Cochlear Implant11 Comments

Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.

My surgeon told Stuart that my surgery went “perfect”.  Yay!

Of course, I’m a weird patient….I had a reaction to the antibiotic.  Not a severe reaction, but I looked like a clown.  I had very red cheeks.  Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.

I also had a reaction to the adhesive they used to attach the heart monitor to me.  I looked like I had huge hickies from an octopus hugging me.  But again, nothing serious.

The pain isn’t bad.  But it is there.  Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk.   I am swollen, but I think it’s better than it was yesterday.  I’m very tired, and I’m having some killer migraines.  That’s why I haven’t posted before now.  The migraines made it way too uncomfortable for me to look at the computer.

So….everything is fine!  I’m doing well!

My Cochlear Implant will be activated on the 31st.

I’ll get photos up as soon as I get them off of my phone!  They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything.  Wait until you see how much hair is gone!  (really, not much at all, you can barely tell!)

off to sleep some more.

Thank you all for so many get well wishes.

One Week until Surgery

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease18 Comments

As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too.  I realized this yesterday.  I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it.  I simply feel like there is too much stress on me right now.  With all the stress, I was making myself sick.

So what am I nervous about?  You would think I’d be nervous about the surgery, but I’m not.  I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me.   However, mostly I’m worried that the surgery will be postponed.  There have been so many delays, I’m having a hard time believing it’s going to happen.  I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.

Now that I realize what has been bothering me so much, I’m dealing with it much better.  I know the surgery will happen.  If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it.  I know it will happen, if not next week as scheduled then as soon as possible afterward.  I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party.  These things will just have to wait.

Now, let’s talk a little about the surgery.  I’m pretty lucky really, about 90% of the surgery has already been done to me.   Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head.  It’s already there.  All that has to be done is thread the wire from the CI into the cochlea, and place the implant.

There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close.  I chose Advanced Bionics.  This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.

This is what will be going in my head:

Cochlear Implant from Advanced Bionics. http://www.advancedbionics.com/us/en/products.html

I’m so happy that Duke is a two processor facility.  The processor is the part that you see on the outside.  Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each.  I chose to get one of each.  One processor is called the Harmony, it is a Behind The Ear type.  I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.

Here’s a photo of the Harmony Processor:

Harmony Processor – photo from Advanced Bionics website.

The Harmony comes in a variety of colors.  I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose.  We’ll have to wait and see after I get hooked up.  You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using.  I was able to chose different types of rechargeable batteries, small and large.  The small battery doesn’t last as long as the larger one.  I ordered both.

The other processor I chose was the Neptune.  The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it!  The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect.  The microphone is on the part that fits to the head.

Here’s a photo of the Neptune:

Neptune Processor – photo from Advanced Bionics

I realize the photo above doesn’t give you a good idea of what the Neptune really looks like.  So here’s a few that will give you a better idea:

This photo shows the Neptune Processor. The thinner profile is not water proof, you must add a different piece to the processor to make it water proof, that is shown on the thicker profile. (photo from AdvancedBionics website)

 

This shows the Neptune on a child while swimming. The processor is hooked to the arm band. (photo from Advanced Bionics)
This shows the processor clipped in a pocket, and in a girl’s hair. (my hair is long, I could completely cover the CI in my hair if I wanted.)
(photo from Advanced Bionics)

With the Neptune I was also given the opportunity of picking all kinds of colors.  I know I picked a brown, and the lime green seen above, but I don’t remember the rest.  We’ll all be surprised when I get hooked up.

The CI will be turned on 2 weeks after surgery.  That will be the beginning of August, hopefully the 2nd or 3rd.

Anybody want to know anything else?

I know this is a LONG post, but it’s full of information, right?

We can make it, one day at a time. : )

Wonky, Sloshy Head

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease11 Comments
Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Day 23

On By WendyIn Chronic Illness, CSF, Fructose Malabsorption, Headaches, Meniere's Disease, Migraines, Pain12 Comments

*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet.  I cannot post any images or tags.  Sorry*

Last night I started on Diamox, per doctor Gray’s instructions.  Still talking a little Topamax, I have to wean off of it.

I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good.  We decided to watch some things on Netflix because I was afraid to go to sleep.  First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it?  Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair.  (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?

Finally, I decided to try to sleep.  I have found I feel a bit better if I’m not lying flat.  So I propped myself up a bit and I do believe I was asleep before my eyes were shut!  I woke up about 4 1/2 hours later with a headache in about the 4 range.  A 4!  OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days.  Occasionally hitting a 6, and if I hit a 5 I was pretty doped up!   I was so happy.  I thought, “Yes, this is going to work!”  Then I thought, “Well, this means I definitely have high pressure.”  You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!

I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach.  Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet.  So I went back to sleep.  When we woke again, my head was back to an 8.  Stuart made me some breakfast.  I ate, took my morning medications.  Including the Diamox and the little bit of Topamax.  Shortly afterward the world started to spin.  Luckily, if I stayed very still on my right side it was almost still.  So I dozed.  But if I tried to move it went crazy again!  (and oh how I had to go to the bathroom! Isn’t that always the way?)  This last over 2 hours.

My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5.  But I feel much more dopey when I take those than I used to.  I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived.  Unfortunately, often when I try to sleep I start to spin.  That just happened a little while ago.  I gave up and decided to update all of you.

All and all, I take last night as a good sign.  Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed!  It’s horrible.  I have 2 people living in my house and I haven’t seen them in days.  I’m still lonely.  It’s sad really.  But it’s hard.  People don’t want to intrude when I’m like this.  I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely.  Thankfully, I do have Stuart, and he tries so hard to keep me entertained.  : )

I’m not crazy about being on Diamox.  The side effects aren’t fun.  Well, two in particular.  One is this tingling sensation.  Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling.  The other is brain fog.  Often very intense brain fog.  So we’ll have to see if I can deal with that.

I will say, either the Topamax or the Diamox  (these two drugs are in the same class) is already reducing my appetite.  Thank goodness, I needed that!  I weighed in at the doctor’s on Wednesday at 200.9 lbs.  I NEVER thought I’d ever see 200lbs.  I’m only 5′ 4 1/2″.  I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs.  I was happy today to feel like my appetite was much more back to normal.  Ever since I started having trouble with this fructose intolerance I’ve been so hungry.  Having cravings I just couldn’t satisfy.  Top that off with not being able to exercise.  I gained about 55 lbs.  Now it’s time to take that off!

Anyone out there want a weight loss buddy?  As soon as I can do any exercise at all I will be easing into something slowly.  Stuart surprised me, he’s looking into getting a therapeutic pool.  I don’t think we can afford it.  But it sure would be nice.  First things first, I need to get this vertigo under control first.  Can’t be getting in water when I can’t see straight.  : )

OK, as you can tell, I am sleep deprived and just rambling.

with no photos…my posts are a bit boring huh?

I leave you with this…..

Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope

Dizzy Day – and an update on SOPA and PIPA.

On By WendyIn Chronic Illness, Headaches, Meniere's Disease10 Comments

I should have known better.

As I’ve mentioned before, I haven’t had the greatest sleep schedule, or sleep at all really.  So my doctor put me on Rozerem.  Rozerem is a sleep aid, but it isn’t addictive, and can take up to a week for full effects.  4% of the patients had increased dizziness compared to 3% who took the placebo.  So a good choice for me, right?  Umm, not so much.  It was prescribed before my surgery and each time I took it I woke up with vertigo.

Rozerem Ad

Last night I decided to give it a try again, thinking possibly it would be different now since things have calmed down so much.

Yes, I should have known better.  I woke up, not with vertigo exactly, but the world is not being still!  I’m using the walker to get to the bathroom and every time I move my head to either side I feel like I’m going to barf.  I have acid reflux so bad, it hurts all the way down my esophagus and into my stomach.  Neither my prescription acid medication nor Maalox is working.  And the diarrhea is back.  (yes I had one day of normality, yesterday, I’ve not eaten any vegetables, except a pickle and a piece of lettuce on my burger yesterday, for 3 days.  The burgers I made, so I know they were safe.  I think most of the diarrhea today is because of the spinny head.  It does put me in the fight or flight mode, constantly expecting a full-blown attack.

I got the book Food Intolerance Management Plan by Sue Shepherd yesterday.  It has the most up to date information about Fructose Malabsorption and other food intolerances.  Sue Shepherd is considered THE expert in Fructose Malabsorption (FructMal).  So I looked at the book, from cover to cover yesterday.  I just knew I’d find something I’ve been doing wrong.  Nope.  I’ve been eating all safe foods.  This book gives a lot more variety than I’ve been eating, and says I can eat much larger servings than I have been.  So why is it that every time I eat a vegetable, I get sick?  Ugh!  I’m working on it.  That’s my big goal this year, find out how to stop this GI trouble!  Then I’ll think about losing weight.

So enough about my bad day.  (we all know, it’s just a day, one day at a time right?)

Image credits: hikingartist.com

A friend of mine works for Red Hat. It’s the world’s Open Source leader, according to their website.  (yes, I’m a big foggy on all of that.  So not the geek.)  My friend, Ruth, wrote an article about SOPA and PIPA.  Here’s the link: http://opensource.com/life/12/1/sopa-shelved-fight-must-turn-pipa-wikipedia-will-join-blackout

The title tells the story in a nutshell.  SOPA shelved, Fight must turn to PIPA. Wikipedia will join blackout.

Did you see the last part…Wikipedia will join the Blackout!!!  (Don’t forget the Blackout is the 18th, so you may be on line and not be able to find many of your favorite spots.)

If Google would join, that would make all the difference.  Could you imagine a day without Google?  Even just shutting down their search engine would make a huge statement.  But alas, I doubt they will.

However, it also looks like WordPress has joined the strike, so my blog may not show up anyway.  Neither would any other blog on WordPress.

On a different soap box….Don’t forget to PLEASE sign the petition about Headache Disorders – The Petition is Here.

Now, I’m going to take a nap, and hope my head is less wonky when I get up!

Inspired by another…Lying in bed

On By WendyIn Meniere's Disease2 Comments

free image from Dreamtime that I manipulated with Photoshop

 

 

lying in bed…

I see the walls move…
If I stand, will I fall?
lying in bed, I’m safe.
Hiding from the world I cannot hear.

lying in bed…
looking beside me,

Stuart on a carousel, yes, the irony does not escape me.


I feel the warmth,
the comfort,
knowing if the room continues to move,
he will always be steady.

 

 

 

This poem was inspired by another’s poem with the same title.  Read Phylor’s Poem here: http://phylor.wordpress.com/2012/01/06/lying-in-bed-a-belated-carry-on-tuesday/

Thank you for the inspiration!