Reading other Blogs about Meniere’s Disease

Sandy Exhausted from Playing the Wii while waiting for me to stop reading Blogs.

Yesterday and today I have been catching up on some reading…no not book reading…blog reading.  I decided to search for more blogs about Meniere’s Disease and just see what other people are posting about.

Of course, there really aren’t that many blogs about Meniere’s since there aren’t that many of us, and not all of us decide to write about our experiences.

I found that some people like to write a lot about everything they can find out about Meniere’s.  The latest developments, other diseases that might go along with it….  But most of you are just like me.  We write about how this disease is treating us, and I’ve found that it treats people differently.

The treatments seem to be as varied as the patients.

So many people are so excited about this new vestibular device that is being talked about.  I don’t know why, but I’m not yet.  I just think that it’s too early.  I’m so happy that they are experimenting and studying and doing something positive that may help us some day…but I’m just so miserable right now that it just seems so out of reach for me.

I get such hope from reading other people’s experiences.  Reading that a Meniett Device worked for someone, and a Gent injection worked for someone else.  Others get along pretty well with just a low sodium diet and supplements. Then there is the girl who has a cochlear implant and a service dog…I find her so inspirational.

For the past few days I’ve been living bed to couch again.  I can barely hear, and I feel like an attack is about to start at any moment.  I took a bath tonight and thought I was going to barf in the tub.  My husband rushed in with the Valium and Phenergan, and I got calmed down.  He finished giving me my bath and I crawled into bed.  I’m not complaining.  This is just the facts of my life right now.

My husband talked to Dr. Kaylie yesterday and he said he is going to talk to Dr. Gray about getting me back in to check on the patches.  We are supposed to hear from Dr. Gray by Wednesday.  I’m sure something can be done.  After all, I felt so much better immediately after the blood patch.  I know it can be better.

I’m adding to my list of blogs that I read, please take the time to check some of them out.  You may find a new friend out there.  I know I have.

Huh? What did you say?

It snowed here on Dec. 26th!

I didn’t have an appropriate picture for this post, so I decided to just share a picture from our Snow Day.  It’s almost all gone now.

I so can not hear right now.  It is so aggravating to go from one week of being able to hear pretty darn good (at least out of one ear), and then the next week I can barely hear at all.

It also makes me very uneasy because I know that normally when I can’t hear I’m going to have a full blown Meniere’s attack some time soon.  I may be able to put it off for a while with medication and such, but it will probably happen within a week or so.  Then I will be able to hear again.  That just does not make sense to me.  Why can I hear so much better right after I have vertigo and puke my guts out?

(More stuff that is poopy graphic and you may not want to read.)  Well, the diarrhea is still going strong. 5 times so far.  Today about 2 hours after eating my lunch, I saw it all in the toilet.  My doctor once asked me how did I know it was what I just ate….well, let’s see…it is in the same form  as when it went in.  This time I had lettuce, I haven’t eaten lettuce in at least a week, it was very visible.  It’s also bright yellow.  It looks like it’s bile.  I looked up on line what yellow stools could mean.  On About.com it said that it often means you have GERD and are passing food through your system too fast.  Well, it does sound like I’m passing food through way too fast.  (can not understand how I’m gaining weight…but we’ll worry about that later.)  You know, my doctors haven’t even asked me what color it usually is.  They have asked if it’s black, or if I see blood, but that’s all.  It’s just so confusing.

It makes it harder to deal with a second illness when you have Meniere’s.  Numerous times I’ve had cancel appointments or tests that have been scheduled because I was having an attack, or I was recovering from one I just had.  (I don’t know about anyone else, but I’m pretty worthless the day after an attack.  I just have to sleep.)

So I didn’t get the Breath Tests done, I didn’t get the up CT scan done, I didn’t get the scope of the upper GI track done…..I do have the scope rescheduled for the 8th of January.  But, heck, I would probably have known what was wrong with my gut by now if I didn’t have Meniere’s to deal with too.

Stuart keeps saying, let’s concentrate on one thing at a time.  But that’s pretty hard when you are running to the bathroom all the time, and keep growing out of your clothes.

Hey, I got off the couch today.  We went had lunch at Pei Wei, to the grocery store, and went to one of the biggest Thrift Stores I know of.

The Durham Rescue Mission Bargain Center used to be a car dealership.  I love shopping there.  Today and I got 2 sweaters that are long.  I seem to have so many sweaters that show my middle when I move.  I think I must have bought them when waistlines where high, and now that they are lower my tops don’t seem to be long enough.  (however, I do not where low riders.  I would just have one big muffin top.  Don’t you think that’s just disgusting when you see that?)

I also bought 2 pretty plates to photograph my food on.  I only have white dishes, and I think my photographs are getting pretty boring.  I was looking for a pretty bowl to photograph things like soup in, all of my bowls are so deep it’s hard to get a good picture.  However, I have to admit, if I was being judged for plating my food, like they do on Iron Chef, I would lose miserably.  LOL  The truth is, I really should be able to set up better photographs, after all that was one of my specialties in college.  (I majored in Art with a specialization in painting and photography.  Look how much I use it now.  hahaha)

We also got the game CLUE.  I hope all the pieces are there.  Stuart found this thing on-line that tells you how to take 4 games, and make a whole bunch more.  The 4 games are Trivial Pursuit, CLUE, Scrabble, and Monopoly.  You use the different pieces on different boards and just mix it all up and make new games.  I’m looking forward to seeing what he comes up with.  However, we have to get another Scrabble game, I don’t know what happened to mine.

We bought all of this for less than $10!  Isn’t that cool?

So that’s a day in the life of Wendy, I’m glad you could join me.

Oh What a Night! (and not in a good way)

I had a horrible attack last night.

All day yesterday I was following a weird diet because I was supposed to have a hydrogen Breath test today (this checks to see if you are digesting your food properly), then I was supposed to have a breath test for Lactose Intolerance and Fructose Intolerance.  So all day I couldn’t have dairy, soy, fruit, most veggies (I could have overly cooked or canned Asparagus, Green Beans, Spinach, Carrots, and baby Okra.  Ewww, canned veggies.)  I could have lot’s of carbs, but I had to limit them to 30grams per meal.  It was crazy.  I could eat meat, but I don’t usually eat that much meat.  So yesterday I had more meat than I usually eat, and some canned veggies…I know I said ewwww, before but…ewwww.  The Asparagus was slimy and had too much sodium, the Spinach tasted like dirt, I didn’t even try anything else.  Just too icky.

Around 8:15pm I started to feel a little spinny.  Stuart got me a Valium and I thought that would do it, but then it started getting worse, I took a Phenergan, and a Diamox (this is the pill that lowers your pressure), I thought perhaps since I had more sodium than usual yesterday it might have spiked my pressure.  Well, I think taking that pill may have been a huge mistake.

The spinning got much worse, and no amount of trying to keep myself calm was working.  Then came the heat, I know when you start to get really hot, I’ll probably be throwing up soon.  Well, first diarrhea hit.  Yes, I was spinning, about to toss my cookies and I had to run to the bathroom.  Thank God for my husband and my walker.  I made it back to the couch, and started throwing up.  For over 2.5 hours I was throwing up, long past the point of anything being left in my stomach.  And the pain…oh the stomach pain.  The burning and gnawing feeling, and all my muscles working in over time. I was shaking uncontrollably.  I was to the point where I was choking, and couldn’t breathe at some points. Everything was pushing out, and I couldn’t take a breath in.  I hate to admit this, but I couldn’t hold my water at one point when I was throwing up, all the muscles were just not working like they should.

I realized last night how much this would kill me if I had to watch my husband go through it.  He works so hard to make me as comfortable as possible, and allow me to still keep some of my dignity.  He keeps a clean bucket for me to throw up in and switches out the moment there is a break so I won’t have to smell it.  He even puts a little mouth wash in it in case some of the smell lingers I won’t smell it.  He cleans me up, keeps wet wash cloths close by, and holds me tight and lets me squeeze his hand when things get bad.  When I wet myself he simply put a pad under me and when things calmed down he helped me get cleaned up.  He even puts in the Phenergan suppositories for me.  Every time this happens I am so amazed at how well he handles it, you can tell it’s tearing him apart that he can’t make it stop and help me more, but he tries so hard to do everything he can, and tells me that he is just grateful that he can be here for me.  I don’t know what I’d do without him.  I feel like he does so much for me, and I’m just dead weight.  I feel like I’m worthless, I just don’t know how to make things better.

I know, I have hope that things will get better.  I will once again be able to get off of this darn couch.  But today, I just feel awful, and I’m wallowing a little.

I realized the other day that if/when they do make me better, I don’t have any skills to do anything.  I thought about going back to school, but I’ve been out for so long that none of my credits would count now, and since I haven’t been working they can’t take my experiences there into account.  I just don’t know what I would do with myself.  But I would like the opportunity to find out.

Sorry this is such a scattered post.  I usually feel better than this the day after an attack, but I barely have the energy to stand up, and can’t think about walking without my walker.  (of course, I’m still running to the bathroom, but there is so very little coming out.)  I’m pretty miserable today.  I hurt all over, my head hurts, my chest, stomach, bowels….I just feel bad.

So lot’s of Gatorade, and bland foods.  Snuggling on the couch with my dear sweet dog, and sometimes the cat joins us too.  Perhaps I’ll finish the book I’ve been reading.  But for now, I think I’ll take a nap.

Thanks for listening to me rant.  I feel better already just getting it all off my chest.

Christmas Parties

I had 2 Christmas parties to attend this week.  One on Thursday night and another on Saturday night.  I am very proud of myself that I made it to both of them.

The first party was full of people who know me well and understand my situation.  My hearing deficit, my dizziness, my Celiac disease…  They are a wonderful bunch of people who tried hard to make me as comfortable as possible.  I was suffering from disequilibrium pretty bad, and my hearing was much less than desirable, but I had my amplifier in one ear and it helped a lot.  I pretty much sat in one place and if anyone wanted to visit with me, they came to me.  When I told them I couldn’t hear them very well, they would make sure to come closer, speak clearly, and be sure to face me.  I’m not great at reading lips, but if I can hear part of the conversation I can read lips a little, and then I can piece things together.

These friends were also wonderful about making sure I had gluten-free food to eat.  I did make sure and fill my plate before anyone else to avoid cross contamination. (There was a lot of bread and cookies and such on the tables too, and just one crumb is all it takes.)  One friend was even kind enough to make gluten-free brownies for me!

The party on Saturday night was a completely different story.

I wasn’t feeling well…a little unsteady.  My hearing was horrible.  There was so much noise in this house, and unfortunately I didn’t charge my amplifier enough so it was dying very fast.  With in the first hour I was almost completely deaf.

I was lucky enough to be sitting by a friend for most of the time and she would interpret what was being said for me so I would know what was going on.  We also left the party right after we opened gifts.  (I will say I was thrilled with my gifts!  I felt like I had Christmas a little early.)  I just wish I could have heard all the Christmas wishes from my friends.  I also knew to make sure and eat a full meal before going to this party, because there wouldn’t be anything there that I would be able to eat and be assured that is was safe.

I did have one heart warming experience.  I was sitting on a little couch after we opened our presents and my friend’s son, Nate, came running up to me and hugged me and said, “I love you!”  Nate is a very special little boy.  He is often very shy, especially when there are a lot of people around, so this just thrilled my heart.  I haven’t been able to spend as much time with him as I would have liked over the past year.  He is 2 1/2 years old, and has a huge part of my heart.

How do you handle a party situation?  I know many people don’t want to feel different, and avoid these situations because they can’t hear or because they are afraid they may have an attack.  I did have to take Valium while I was at the party Saturday night, but I didn’t feel bad enough that I thought I was going to have a full-fledged attack.  I also prefer it if people know what is wrong with me.  I want people to know how to talk with me so I’m more likely to hear them.  I want people to understand that I might grab a hold of them if I get off-balance as I walk by.  This made the party on Thursday night much easier than the party on Saturday night.

Does it embarrass you that when you can’t hear someone?  (I sure get frustrated some times!)

Do you avoid social situations? (If I’ve recently had an attack, or feel like I might have one,  I stay home.  But lately, I’m pushing it a little bit more and trying to be more social despite my fears.)

Do you have warning signs before you have an attack?

I’m scared.

Snow falling in my back yard, December 4th, 2010

Last night I went to small Christmas gathering, I even drove myself!  I was very proud.  Unfortunately, during the party I started getting a pretty bad headache, and then I noticed my hearing dropped.  Dramatically dropped.

I came home and my stomach was killing me, something I ate at this gathering had caused me a lot of distress.  I ate half of a sandwich and was feeling much better.  Well, my stomach felt better….not my head, and the hearing was still way down.

I decided to take one of the pressure pills. (the pills Dr. Gray gave me that would reduce the spinal fluid pressure if it started building up too high.  She said to take one if I had a headache.)  My headache did not get better, I decided to take 1/2 of a pain pill and try to sleep.  I slept for 3 hours and woke up in horrible pain.  My neck, shoulders, and head all hurt.  Plus, my hands felt all tingly.  I took a couple of Tylenol, and tried to massage some areas and stretch and finally I was able to go back to sleep.

This morning when I woke up my hands were still tingling, and soon the headache started.  I’ve been fighting a headache all day.  Stuart and I went out for a while today,  we went to buy him a pair of jeans, then we went to the grocery store.  The grocery store was packed because it was snowing.  People in NC freak out when it calls for snow.  Unfortunately, we really had to get some groceries or I never would have braved that mob.

When we got home my head was about to pound off.  I again started with the pressure pill.  It didn’t help my head at all, and soon my neck and shoulders were cramping again, and my hands were all tingly.  I looked up the side effects of this medication.  It says that these are “Serious Side Effects – seek medical attention immediately”.  Well, I knew that it would wear off soon, so I didn’t seek medical attention immediately, but I won’t be taking any more of those pills.   Stuart is going to call Dr. Gray tomorrow.  (Yes, I know it will be Sunday, but that’s what she gave me her pager and cell phone number for, right?  She can always decide not to call me back until Monday.)

I’m so scared that the blood patch didn’t take, or maybe I was just starting to feel better because it was my time to start feeling better and now I’m starting to feel bad again.  Yesterday, I was so happy.  I had a long conversation with a friend on the phone, and I drove myself to a party…I actually went to a party, by my self, at night!   Today, I can’t talk on the phone, and I’m afraid to push it.  I’m really scared the procedure didn’t work.

Well, if it didn’t, we’ll figure out something.  It may not be the cure that this procedure was hoping for, but it will be something.  My doctors will have learned a lot more about this disease, and I will have had at least a small reprieve.  I will pick myself up, dust myself off, and find a way to have a life despite my illness.

"The most common way people give up their power is by thinking they don’t have any". Alice Walker

I saw this quote by Alice Walker, and I thought about how much I believed I had no power over anything in my life when the Meniere’s was bad.

I was so dependent on my husband for EVERYTHING!  From paying all the bills, to helping me get to the bathroom.  I had no choice for anything in my life…but that’s not exactly true is it?  I could have completely given up and just packed it all in.  I could have stopped trying to get out of bed.  I could have stopped caring that I had to be taken care of and just given in, but I fought it every step of the way.  Sometimes, it hurt my husband, but most of the time when I really needed him I let him help, but when I didn’t need help, I let him know in no uncertain terms.  (My biggest regret is that I wasn’t easier on him.)

There were a few times when I thought it would easier just to give up and take a bottle of pills and stop being the burden that I felt like I was.  Those are the times I gave up all my power.  But then I’d realize that just because this disease had control of my body, it didn’t have control of my mind.  So, I worked as hard as I could to find a way to live a better life with Meniere’s.  I never thought that I would have the chance of getting rid of the vertigo, and living a mostly normal life again.

Ups and Downs of the Weekend

Saturday was an ok day for me.  I had a bad attitude, but other than that, I was able to go out to lunch with my husband, and run some errands.  We even ordered our little Organic Turkey Breast from Earth Fare, for Thanksgiving.  I’m pretty proud of myself that I really think I can pull off having a Thanksgiving dinner without getting off the couch.  More about that in my next post.

Me and Sandy

Sunday, was not a good day.  I know it was because I couldn’t sleep Saturday night so I was all out of whack on Sunday, but knowing why, and having it happen, really doesn’t help that much does it?  I didn’t get to sleep until after 4:30am.  Then my dear dog woke me up around 11am.  She really doesn’t bother me much, she usually goes to Stuart for everything when I’m asleep because he will wake up and give her things, I often don’t even hear her.  However, I was sleeping a little too late for her, and she decided she had to check on me.  She cuddled up right at my face, she was so cute, but I really wasn’t awake enough to get up.  But I did anyway.  Straight to the couch.

My hubby made me breakfast, but I was still hungry.  But I was also very dizzy.  He said he was going upstairs to take a shower, so I decided to go upstairs too, just in case something happened he would be able to hear me.  I ended up crawling up the stairs, and hobbling to the bed with much help from Stuart.  I took a Valium and Phenergan.  After about 20mins, I still felt bad, so I used a Phenergan suppository too.

I was so sleepy, but every time I closed my eyes the world would start to spin.  Does anyone else ever have that happen when you are really tired?  I don’t feel well even with my eyes open, but at least the world isn’t going round and round, then as soon as I close my eyes I feel like everything is moving.  It’s hard….I’m so sleepy yet I’m afraid to close my eyes.

I was still hungry though, if I’m hungry my symptoms get worse.  So Stuart brought me half of a sweet potato.  It helped.  He then left to start grilling chicken.  I had left over Wild Rice Blend I’d made in the crock pot the day before, and I made a pot of black beans over night on Saturday night.  We also had broccoli we bought the day before.  It was starting to smell very good downstairs, but thankfully, I dozed off.  And slept for a couple of hours.

So, the great lunch my darling husband was making, became my dinner.  It was very good.  I was feeling much better, but I was still suffering from some pretty serious disequilibrium.

Today, the disequilibrium is still there, but I am hearing better out of my left ear than I have in months.  What’s up with that?  I even did without my amplifier when Stuart and I were having a chat over lunch.  That was nice.

My hearing is still pretty tinny, and it’s not picking up all frequencies just right, but I can understand what my husband is saying.  I love that.