Tag: Meniere’s Disease

ABC’s of Disability – “C”

On By WendyIn Disability, Meniere's Disease5 Comments

The letter for this week is C.  I could think of a lot of words that I could use that begin with C that are important to people with disablities, but my husband said last week after we did the B’s that the letter C should be Creativity.  At first I dismissed it.  I thought he was just being funny because I’m an artist, or at least I try to be.  I seem to have lost a bit of my drive over the past year or so, but I’m trying hard to get it back!

Then I realized Creativity is the perfect word for the day.

When someone find them self disabled the most important thing they can do is get creative.

Depending on your disability we have to get creative about different things. but we all have to get creative.  Here are a few things I’ve gotten creative about since I found myself disabled with Meniere’s Disease:

  • I’ve tried to get creative about how to cook dinner.  Often I feel better in the mornings, so I’ve begun to cook many more meals in the slow cooker.  All I have to do is throw some things in the pot in the morning, and that evening, we have dinner.
  • Some days I’m too dizzy to walk around the house without help, so instead of calling my husband every time I need to move, I got a walker.  You may not call that creative.  But I think it is.  It has allowed me to become much more independent in my house.
  • I have sudden attacks of vertigo so I need to have my medication at a moments notice.  I found these little water proof vials we can keep on our key chains that keep plenty of pills in there for me.  Now we just keep our keys with us all the time.
  • I have an increased chance of falling, so we creatively covered the corners to the tables that I often walk by with towels.  (No they aren’t on our dining room table, I don’t walk that close to it.)  But the side tables in the living room, and my bedside table have a towel draped across the front.  You know it really doesn’t look that weird.
  • I get dizzy when I try to wash my hair.  Closing my eyes while I put my hair back under the water in the shower gets me dizzy.  So my husband valiantly offered to help.  We have a shower head that you can take off and move, so I don’t have to lean my head back much or close my eyes, he just moves the shower head around and wets and rinses my hair for me.
  • I love to take a bath.  But I also have a bad hip, so it’s very hard for me to just get up and out of the tub.  I used to call my husband for help and he would try to lift me and I would slip and it was just a mess.  Now, I found that I can simply roll over on my hands and knees and then lift myself up so much easier.  I usually have my husband in there to watch out for me just in case, but it’s so much easier, and I can do it myself!
  • My husband is very creative, or maybe just very organized, when I have a vertigo attack.  He has an assembly line of trash cans for me to throw up in so I won’t smell it, he has a number of wet wash cloths, he washes out the cans with mouth wash (again so I won’t smell it.) It may sound simple now, but he had to be creative to come up with this system.
  • Just like the system we have for when I start to feel bad.  What meds to I need, how fast, am I cold, am I hot….but it’s all a smooth system now because we were creative.  No one told us how to do all of this.
  • Every time I go to the doctor they ask for a list of my medications.  I have a spread sheet, every time it changes I print out a new one, and I keep it in my wallet.  I just take it out and give it to them.  My creation.  (I also have a medical ID bracelet and on the back it states that the list of my meds is in my wallet.)  This is important to know.  I created the design of my bracelet.
  • I also have a wheat allergy/Celiac disease.  I have to be creative with the foods that I eat.
  • I often can’t bend down to pick things up because I get dizzy, so I’ll pick things up with my toes.  (I know I really need to get one of those picker upper things that you can get, but so far, toes work).
  • I can’t bend down to scrub the floor of the shower, so I put the cleaner on a cloth and scrub with my foot.
  • Sex can be a challenge, not just with the dizziness but with the hip problems too.  (actually, that’s a big issue)  But we try to get creative.  As long as we keep trying in this area, I think that is the most important thing.  We have to make sure our relationship doesn’t deteriorate because it had to change so much.

Ok, that’s where I’ll leave you with the letter C.

Funny, it seems like I keep ending these talking about sex….hummm…an idea for a future post?  How do you keep the romance in your relationship now that you have a disability?

In what ways do you find yourself getting creative to help with your disability?

Things I’ve been thinking about.

On By WendyIn Disability, Life, Meniere's Disease9 Comments
The Thinker by Auguste Rodin (photo courtesy of Wiki Commons)

I’ve had many things that I’ve had to fight in my life.  I had a tumor that caused me to break my arm 5 times before they operated when I was 15, I was told I had fibromyalgia, chronic fatigue, IBS….I have a wheat allergy, probably celiac-disease, hypothyroidism, I’m bipolar, I’ve been raped, I’ve been divorced, I was in an abusive relationship…..Everything I’ve been though I came out fighting, and I persevered.

Then I got Meniere’s Disease.  At first it was really no big deal.  I would have an attack every once in a while. Sure I was a little off-balance, but I’ve been a klutz most of my life, and I had constant ear infections growing up, I was used to my ears bothering me.  My ENT gave me tubes, and that seemed to work, for a while.  (Dr. Kaylie thinks I was really just going through a good time again, and the treatment wasn’t really working.  I don’t know.  It seemed to work for a couple of years.)   Then starting the beginning of last year the Meniere’s went bilateral, and I haven’t been the same.  I went from an independent person to a person who has to depend on her husband for nearly everything a lot of the time.

There are 3 major things that make this disease so very hard for me to deal with.

  1. I’m afraid most of the time.  Not just of having an attack, now don’t get me wrong that scares me, a lot.  But I’m also afraid that every little happy thing I do, that it may be the last time I get to do it.  For example, I’m afraid I’ll never be able to drive again.  When I try to do something that makes me dizzy, I think, “I may never be able to do this again.”
  2. I feel like a burden.  I know my husband says I shouldn’t.  But I often do.  I can’t do a lot.  And so many of my friends have just dropped of the face of the earth, I have to feel like they just couldn’t handle it.  Their lives are too busy to handle having a disabled friend….it’s just hard.
  3. I often feel like I don’t have anything to fight.  (I have to depend on the doctors for everything.  I can’t do anything to try to fight for myself.)

But I’m realizing I’m wrong on most of those accounts.  I’m beginning to look at things differently.  In part because of some of you, because of my darling husband, and my pretty smart therapist.  (who I made cry this week….I really do need to stop making people cry.  I’m so happy that people care about me, but I hate making people cry.  You know I say that, and I mean it, but then in a small way, it warms my heart that someone cares that much about me.)

Better ways to think of things:

  1. I do need to have a little bit of healthy fear, so I will recognize when an attack is coming, so I can try to head if off.  But I need to treasure the things I do, if I don’t get to do them again, at least I will have these precious times.  I also need to remember, that we are working to get this Meniere’s under control, and I may be able to do many things again.
  2. My husband doesn’t feel like I’m a burden.  He is so grateful for that he can be here for me, and it bothers him that he can’t do more.  As for my friends.  As our lives change, sometimes we lose friends, and we gain other friends.  It doesn’t have to be because I’m disabled.  It could be for any number of reasons.  Perhaps, it’s just this time in our lives that our friendship isn’t working any long.
  3. My attitude about things can be a good fight in itself.  Working to find out as much as I can about my disease, and what can be done.  Simply taking my medication when I feel like an attack is coming on is fighting.  I need to realize that I am fighting, and I’m constantly finding new ways of fighting back.  I will not allow this disease to take away my hope, or my desire to fight.

There may be times that I forget this:

When this happens, I hope that you  (my friends) will kick me in the butt and point out what I have said here and get me back on the path I want to follow.

What I did today…and Spaghetti with Sausage

On By WendyIn Gluten-Free, Life, Meniere's Disease, Recipe8 Comments

Every Saturday we try to go to the Durham Farmer’s Market.  And every Saturday morning as we are getting ready, I say something and Stuart thinks I’m being mean to him.  We end up being snappy to one another, and it starts that way….I hate it.  Finally, I realized today that I get very anxious about getting up and going anywhere, and it’s not just when we are going to the Farmer’s Market it’s anywhere.  It’s just very noticeable on Saturdays because we do this every Saturday.

I was being a bitch.  I snap, and I’m snarky, and I am simply not the nicest of people.  But it really has nothing to do with Stuart.  First, I’ve gained so much weight, I find it hard for me to get ready and feel comfortable (read *pretty* here).  What woman does not get bitchy when she’s feeling like that?

Then I start to get more and more anxious about being out and about and what if something happens.  When we are home an attack is much easier to stop, or at least make it much easier.  But when we are out and about, it’s much harder.  What if I collapse?  What if we have to leave some place in a hurry?  There have been a few times we’ve had to leave a restaurant, just leave, the food hadn’t arrived, I was getting sick, and we had to leave NOW.  It’s so hard to explain, no we don’t have time for you to put the food in a to go box, here, we will pay you for it, but we have to leave now.  (besides I would not be able to stand smelling the food in the car all the way home.)  People look at you so funny, because all of a sudden I’m walking like I’m drunk and I can’t stand up by myself, and I wasn’t drunk a few minutes ago.  I can’t imagine what they must think after we leave.  We try to say, “She has vertigo, she’s getting very sick, very fast, we have to leave.  But how can they understand?

So now I understand.  I’m anxious about leaving the house, and it comes across as me being grumpy.  Maybe somewhere in the back of my mind I’m hoping he will get mad and say, “Well we just won’t go then.”  But instead he told me that I could go by myself.  Oh my, the terror that went through me.  But you know what?  I was going to do it.  Just because I got so mad that he said that to me.  And how dangerous would that have been?  Dumb, Dumb, Dumb.  (well, today, I’ve had a pretty good day, so I would probably have been fine, but still, it wouldn’t have been smart….what if…)

Deep Breath Here!  I calmed down and talked with Stuart.  I apologized.   He apologized.  And I realized what was really going on with me.  It was a very nice talk, and I hope we can deal with it better in the future now that we know what was (or may be) causing it.

So, off to the Farmer’s Market we went.  We got there, walked in, hit 3 vendors and said, “It is too dang cold out here!”  And we left.  We came away with a bag of Sun Chokes (also known as Jerusalem Artichokes), some green onions, a bag of mixed winter greens, and some baby turnips.  Not enough veggies for the week, but it was in the 20’s this morning and we all know I’m not a cold natured person…well, neither is my husband.  I’ve never tried Sun Chokes before, but I like trying new things.  I’ll let you know what I decide to do with them.

We then tried to go get breakfast but the breakfast places were way too busy, so we decided to have lunch at the steak house.  Yes, steak for breakfast.  It wasn’t what I wanted, but it wasn’t bad.

We left there and decided to drop by the mall to walk off some of that meal.  I was so bloated and miserable.  After our walk we came home and I realized my keys were missing. (I keep them attached to my purse with a carabiner type hook.) The hook was there, but the keys were gone.  I felt like such a fool.  Stuart called the mall, nope, no one had turned in any keys.  I knew I had them at the steak place because I opened the car door with them.  Stuart still called them, and yep, they were there.  How lucky was that.  Guess I’ll figure out a different way to carry my keys.  Perhaps a carabiner hook that screw locks, I’ll have to go look at them.  All I know is, I’m lucky today.

We also took a trip to the huge thrift store!  We bought a pretty blue bowl, 2 small sushi plates with small sauce bowls and 2 place mats.  All for $3.25!  How cool is that?  I decided I wanted some cuter dishes take pictures of my food for my cooking blog, so it doesn’t matter if I have a set that matches or anything.

We made Spaghetti Sauce tonight.  (see my pretty new bowl and place mat?)

Spaghetti Sauce with Al Fresco Roasted Garlic Chicken Sausage over Noodles

Spaghetti Sauce with Al Fresco Roasted Garlic Sausage

  • 1 medium to large onion chopped
  • 2 tablespoons olive oil
  • 3 teaspoons Italian Seasoning (I didn’t really measure, I just sprinkled it in there until it looked right.  I’ve been making this for a long time.)
  • 2-3 large cloves of garlic minced or chopped what ever is easier for you.  (about 2-3 teaspoons)
  • 1  28oz can Tomato Puree or chopped tomatoes
  • 1 package Al Fresco Roasted Garlic Chicken Sausage

heat olive oil in sauce pan over medium high heat.  Sautee onions until translucent.  Add Italian Seasoning stir for just a second(this will release the oils in the dried herbs.  Add garlic and tomato puree, heat thoroughly.

Cut up sausage in slices that look like round discs.  Brown sausage in a separate pan.  (I guess you could do it in the sauce pan before you add the onion, but I didn’t think about it.)  Add the sausage to the sauce, and heat thoroughly.  Simmer for as long as you want, the longer it simmers the more the flavors will meld together.

*hint, to quickly clean the pan you cooked the sausage in, immediately add water to the hot pan and scrape the brown bits off.  Then pour this out (the chicken sausage doesn’t have much oil, so there is no oil to pour out), add soap to the pan and swish with a cloth, and rinse.  Voila, it’s clean.  (If it doesn’t come clean just add a little baking soda and the last of the brown stuff should come out.)

Serve sauce over noodles of choice (we used Tinkyada Gluten-Free Noodles) with shaved Parmesan cheese on top if desired.

That was most of my Saturday.

Do you get anxious about going places?  Especially if you’ve been having a lot of attacks recently?  Do you find yourself not being so very nice sometimes, and not really knowing why?

The Warrior in All of Us

On By WendyIn Disability, Meniere's DiseaseLeave a comment

I read a series of books by Jim Butcher about a wizard who is also a detective.  His name is Harry Dresden.  My favorite character in this series has always been Michael Carpenter.  Michael was a Knight of the Cross, an ancient order dedicated to bearing and using the three Swords of the Cross to defeat evil. he was the most recent bearer of the sword Amoracchius until he was forced to retire after being badly injured while performing some of his heroic acts. (this takes place in the book Small Favors)

I’m writing about a small story Butcher has written called The Warrior, originally published in the anthology Mean Streets, it was re-released in Oct. of 2010 in a book full short stories about Harry Dresden and his cohorts titled Side Jobs.

Last night I re-read The Warrior and I felt like it had so much to say to people who are dealing with a disability.  (of course, this story does show how Michael is dealing with his new disability, but it is much more.)

In the forward to this story Butcher talks about “The Law of Unintended Consequences”.  He says, “The big important things are built from small and commonplace things, and even our little acts of petty, everyday good and evil have a cumulative effect on our world.”  (Pg. 211)

“Our smallest actions and choices matter.  They tell us who we are.” (Pg. 211)

He goes on to say, “What seems like a good thing or a bad thing might not be either seen from another point of view.” (Pg. 212)

I feel like I could quote most of this story and it would be relevant to our situation.  I tells how knowledge is the best way to conquer fear.  How things happen that you don’t want, after all we are just human, we can’t fix everything, we stop all bad things from happening, some things we just have to accept.

In one part of this story Harry Dresden gives a great pep talk to a little girl who feels she can’t do anything right.  He tells her she has two choices, she can give up or try.  (He even asks if they read Great Expectations in school, and she is amazed that he could make Dickens relevant in her own life.  He tells her she could give up like Miss Havisham, or she could get out there and live life and try.)  This speech deeply touched me, and if I didn’t think I’d get in trouble I’d print it here for you.

Much of this story reminded me of It’s a Wonderful Life showing how you affect people’s lives by the things you do, when you don’t even know it.  In this story, Harry does so many things that he thinks are just little things, but he is shown later that they were just what the person needed to make a huge change.

This is a story full of Faith (yes, with a capital “F”), doing the right thing, trying, showing you how a disability can have a good side, and it I think most importantly it shows that “people have far more power than they realize, if they would only choose to use it.” (Pg. 266 – Jake /Uriel)

We are all warriors.  We only need to choose the right path.  It’s often very hard.  Even Michael is tested in this story, but with a little guidance from a friend, he comes through.  Sometimes it may be very hard to try, and sometimes doing the right thing can be very hard, hopefully at those times we will have the right person say the right thing to us.  But always try to be careful of what you say to and how you treat someone else, you never know how it may effect them.

Even with a disability you can make a huge difference in the world.  One small action at a time.

*As a side note*  I thought it very funny in one part of the story Harry thinks, “(I) then fell back on to the floor of my apartment and watched the apartment spin for a while.”  (of course, he had just been attacked, but I thought – oh boy, can I relate!)

Longing for a Warmer Winter

On By WendyIn Disability, Life, Meniere's Disease7 Comments
A Snow Day in North Carolina

This year we’ve had a lot a snow, and ice.  Not as much as a lot of the country, but more than we usually get in Durham, NC.

In 2006 we moved to Palm Springs, CA for a couple of years.  We had two winters there.

Now in January I sometimes miss the smell of citrus in the air.  In Palm Springs the orange, lemons, limes, and grapefruit trees are full of fruit this time of year. In our yard we had a small orange tree and a beautiful lemon tree.  I used to pick lemons every day during the winter.  I’d make fresh lemonade, I’d cook with them, clean with them, and I’d simply have bowls of lemons sitting around my house for the beauty and the smell.

Lemon Tree in our yard in Palm Springs, CA. Jan. 2006
Our First Orange.

I remember when our small orange tree produced its first orange, Stuart and I split it.  It was so juicy.  I was so thrilled to be eating an orange that I picked from our own yard.  (Stuart grew up in Tucson, so this concept was not as new to him, but he would get so tickled with me.)

We also had this beautiful tree in our yard that they locals called Fairy Dusters.

Here’s a typical sunset seen from our yard:

Palm Tree in the Sunset. Jan. 2006

Living in Palm Springs gave me a great appreciation for warm winters.  It was interesting though, you could get on the Palm Springs Arial Tramway to go up  Mount San Jacinto  (2,643 ft elevation to the station at the top). It would be in the high 70’s and when you got on the Tram in Palm Springs but by the time you reached the top it would be snowing.  It was amazing.  It really gave you an appreciation of just how different the climate in the world is, in just a few minutes you could go from the desert to a freezing mountain top.

Cold weather to me means 1. more Meniere’s attacks.  2. more Migraines. 3. more general aches and pains (I have simply broken too many bones.)  4. my nose runs all the time. 5. I get a cough. 6. I see more mucus than I ever want. 7. I have to run the humidifier because the heat dries me out. 8. I get grumpy….well, even more grumpy than usual.

Oh I could go on I’m sure….I simply do not like the cold.   (*insert here – “bitch, bitch, bitch”*)  Because that’s what I would say if I heard someone else go on and on about this.  : )

Are you one of those people who just couldn’t live without seeing the snow each year?  Who love the cold?  Or are you like me – to heck with that!  I want a warm winter!  Or worse than that….are you one of those who are actually having a warm winter right now?  (really I won’t hate you…but I will envy you.)

* A note about living in Palm Springs.*

Palm Springs, is a little different from actually living in the desert.  It has plenty of water.  They water the grass there all the time.  They have no water shortage.  I still think it is such a waste. There are more than 125 gold courses in the Palm Springs area (this includes the surrounding towns).  All the water they use to keep those gold courses green it made it humid there all the time.  We lived in the desert, yet it was humid.  So in the summers when it was 125F, it was still humid out.  That’s why most of the residents are “snow birds”.  Many of the businesses shut down in the summer.  Even some of the churches close in the summer.  The summers were like living in a ghost town…..a very, very hot ghost town.

small update and Sauerkraut recipe

On By WendyIn Gluten-Free, Medical Tests, Meniere's Disease, Recipe, whole nutrition1 Comment

I have an appointment with Dr. Gray on January 28th at noon.

I don’t know why all of a sudden they were able to get me in sooner, but I’m glad.

We’ll find out what’s going on with the Cerebral Spinal Fluid Pressure.  Hopefully, she will be able to get something straight.  Even leveling things out a little would help a lot.  3-4 attacks a week are driving me crazy.  (as you all know.)

On a side note.  I made Sauerkraut today….well I started the making of Sauerkraut today.  I thought I had pictures of it from the last time I made it but I can’t find them.  : (  So I didn’t take any today.  But I will tell you what I did.  It is so easy!!  (especially if you have a food processor) *this recipe was inspired by the recipe for Raw Sauerkraut in the Whole Life Nutrition Cookbook.

Sauerkraut

  • 1 head of Cabbage
  • 1 – 2 Tablespoons of Sea Salt (I use 1, but the original recipe called for 2)

Peel off a few of the out leaves of the cabbage head.  Save these you will use them later.  Chop the head into small enough pieces to fit in your food processor. (be sure to remove and discard the stalk. I really like the center of the stalk, I always just gobble it up.)

Slice up the cabbage in your food processor with your slicing blade. (if you don’t have a food processor you can do this by hand, but it will take a while, you have to cut it up really small.)  Transfer the cabbage to a bowl and toss with the salt.

Here’s the really hard part if you don’t have a food processor.  Remove the slicing blade from the food processor and put in your little plastic blade.  Return cabbage to food processor in small batches just smashing it up and making it all juicy.  (if you don’t have a food processor you need to just keep smashing he cabbage with a mallet until you get a lot of the juice out.  Of course, this is a great way to get your frustrations out.)

Just spoon your juicy cabbage into a clean jar, and cover with those outer leaves you saved from the beginning.  Press the mixture down so the is some juice covering the leaves.  This won’t be hard.  Keep in a dark dry place for 3-7 days, I like to keep mine in my pantry.  (I do put the lid on the jar, but I don’t tighten it.)  Every day you need to press it down some more so even more juice will cover those leaves.  (eventually the leaves will start to just fall apart, don’t worry about it.)  The original recipe says to start tasting it after about 3 days, mine tastes nasty that soon.  Just smell it, if it smell like sauerkraut, then taste it.  If it taste like you like, then put it in the refrigerator the slow/stop the fermentation process.  If you get a funky scum on the top of your sauerkraut, just spoon it off.

I use a wooden pestle from a mortar and pestle that I have to press my mixture down every day.  Since I don’t use this mortar and pestle any more, I use it exclusively for this, now it smells like pickles.  : )  If you used a pestle made from a different material, or perhaps a mallet, you probably wouldn’t have this problem.

They do make crocks just for making sauerkraut, and I’ve seen much more complicated recipes, but I’ve never tasted better sauerkraut.

I may make it a different way some time, I may even get a fermenting crock so I can make more than one head of cabbage at a time.  But for now, this method does well for me, I just start a new jar before the one in the fridge gets empty.

(If I find those pictures, I’ll post one.  Maybe I will take a picture of the jar I have started at least so you can see what it looks like.)

Tomorrow may be hell, but today was a good day.

On By WendyIn Disability, Gluten-Free, Life, Meniere's Disease2 Comments

I woke up this morning and I heard water dripping.

Most people wouldn’t think anything about that, most people may even be annoyed by that, I thought is was great!  The great thing about it was I HEARD water dripping.  At that moment, I knew it was going to be a good day!

I looked at the clock and realized I slept 8 1/2 hours without waking up (well if I did wake up I don’t remember, so it doesn’t count.)  I turned over and went, Ouch! My head hurts.  I was not going to let that get me down, so I started to think about what I wanted for breakfast.  I knew we went to the Farmer’s Market yesterday and got a box of veggies, including spinach, oh, and there are some wonderful green onions in there….I can do something with that.  (But, dang my head hurts.)

I cuddled up with Stuart and asked if he would like a wonderful breakfast and he said, “we only have one egg, how do you feel today.”  “Much better thank you, but my head really hurts.”  He replied, “Well, then I’ll run get your medicine and pick up some eggs and be back in about 45 minutes and we can have breakfast.”  Oh, how I do so love my husband.  About that time, the cat pounced on me to say hello, then Sandy dog runs in after Stuart has finished feeding her and letting her out for her morning business (yes, he is wonderful)…and I am surrounded by love.  What more could you ask for on a Sunday morning?

So, I play with my “children” for a while, and then get dressed and come downstairs to have everything ready for the eggs (and the potatoes I decided to have him buy) when he got home.  And this is what I made for breakfast:

Scrambled Eggs with Spinach and Green onions with Hash Browns

After seeing the picture it really doesn’t look quite as appetizing as it tasted.  However, I was so thrilled with breakfast, it was one of the most tasty meals I’ve had in a very long time.  (perhaps I shouldn’t say that about my own cooking, but oh my goodness, it was good.)

Today we also went to Home Depot and looked and Tile Saws.  Yes, that really is exciting.  There is an art project that I really want to get started in, and I need a tile saw.  If you read this blog, or know me personally, then you know I like to recycle things.  I saw the most beautiful set of glasses made from wine bottles, and I thought, “What a wonderful idea, I’d really like to do that.”  Well, cutting wine bottles, is not as easy as you would think, especially if you want to have them match, and you want to be able to drink out of them.  So after much research, I think I’m finally ready to get started.  (Luckily, one of my dear friends is a member in a Wine Club, so I have a good resource for wine bottles, and I don’t even have to drink.)  If this works, I plan to talk to a few bars in town and see if they will save their wine bottles for me too, so I can have an even bigger supply.  I plan on making beautiful glasses from wine bottles and hand etch designs on them to make them even more unique. (what do you think?)

We also went to Weaver Street Market today.  (It’s a local co-op, and I can find local, pasture raised meats and eggs there.)  For some reason I’ve been craving beef.  A nice juicy steak.  So we bought steaks.  We also found Stew Beef on sale…so you know what we will be having later this week.  Oh, and we found a delightful Hoop Cheese on sale.  They let me taste this cheese, and it has a mild taste, a bit like a medium cheddar.  I was so pleased to find a local cheese that I really like.  (We have really become locavores.)  We do try to support our local farmers, and we try to eat organic and ethically.  It’s a challenge, but we think it’s worth it.

I’ll be posting the recipe for dinner tonight on Wendy Cooks.  But here’s a picture:

Petite Sirloin, Sautéed Italian Broccoli Greens with Baby Turnips and Carrots

I do so love to cook.  I sing, or hum the whole time I’m cooking, I dance around the kitchen.  It’s just so much fun to create something that brings such joy to my husband (and sometimes other people), and I have to admit I really like to eat good food too.  It’s also fun, to create something really tasty that is nutritious.  One of the most fun things for me to do is to say, “OK, I have these ingredients, what can I make?”  And actually come up with something that people like.  That used to scare me to death, now I think it’s so much fun.  Isn’t it funny how life changes?

I have a phone consultation on Wednesday with a nutritionist to see if we think she can help me with my issues.  (Let’s keep our fingers crossed.)

Tonight, I have a movie date night with my husband.  We’re just going to watch a movie on Netflix, but I can watch a movie on Netflix with my husband tonight because I can HEAR it.  What a treat!

**One big side note.  I realized something yesterday.  I think I know something else that may have majorly attributed to my depression day before yesterday.  I started having really bad cramps yesterday.  I feel like I’m trying to have my period.  This would explain the extreme moods, and my headaches.  At 47 and a half, I’m peri-menopausal.  I’ve found that my hormonal symptoms have gotten much worse since I’ve started skipping periods, and then having heavier periods sometimes.  Hot Flashes, Night Sweats.  (more night sweats than hot flashes.)  The moods are much more unpredictable.  (poor Stuart.)**  Just a thought.

Meniere’s and Menopause…what a combination.

Do you ever wonder?

On By WendyIn Disability, Life, Meniere's Disease8 Comments

What you are about to read is very personal.  I’m not even sure if I should be writing it.  Please, do not judge me, and do not pity me.  I will get through this, but I hit a big bump in the road today…and found out it was a sink hole.  It’s going to take some work to pull myself out.  But I know I can.


Do you ever have one of those days when you wonder if it’s even worth it?

Yeah, you know what I mean.  The thing you don’t dare talk about.

How can I think that way?  My life isn’t that bad.  There are so many people who have lives that are so much worse than mine….but maybe, just maybe, they are stronger than I am.  Or maybe I just want to feel like someone who can do something is listening.

I had the most lovely dream last night, I won’t go into the details.  My husband just doesn’t understand why I let dreams get to me so much.  It’s just a dream…but I know it’s my subconscious trying to tell me something.  Some way to help.

Then I woke up, and realized that I was still here.  And dang it, I can’t hear again.  Then Stuart tells me that he talked to Dr. Gray’s appointment scheduler, and they were trying to get me in sometime in January, but it just doesn’t look like it’s going to work and they don’t have their February calendar open yet.  What?  It’s the middle of January, and you can’t give me a February appointment?  That is just too frigging unbelievable to me.  And yes, I know that they are busy, but I’ve been trying to get someone to help me since December 4th.

Well, everything went a bit down hill from there.  And again, I won’t go in to any more details.  But today has been a very bad day.  After my complete melt down, I tried to sleep.  I kept waking up. I was having the weirdest dreams…these dreams I don’t think meant anything.  They were just weird.  One dream, I was stuck looking at a recipe on how to make Sauerkraut.  I know how to make Sauerkraut.  I just told my husband today that I needed to start a new batch tomorrow, but I don’t think I needed to just stare at the recipe for the whole time I was asleep.  Another dream, I missed jury duty because Stuart told me it was the wrong date, and they were going to arrest me.  In that same dream dog poop was legal tender.  They didn’t understand what checks were.  I was so confused, and so grossed out at the same time.  (but dogs were treated very well)

I’ve cried so much today that I feel like I have blisters around my eye lids.

I scared my husband today.  I feel so bad.  I do wonder if it is really all worth it.  I very logically think.  The problem is with me.  If I were not in the picture the problem would be gone.  Simple.  He completely freaked.  I’ve never seen him so freaked out.  My husband is always so calm and collected.  When I’m having an attack and thinking the world is ending he is my rock, and I saw the rock cracking.

I guess the problem wouldn’t be gone for him, not like I thought it would, I just never believed anyone could care for me that much.  I need to realize just how it would hurt him more if I were not here.  I may be a lot of trouble, but I’m his trouble, and he’s much more willing to deal with that than dealing with not having me here.  My mother died over 17 years ago and I grieve for her every day.  I never want my husband to hurt that bad, and I saw that horror in his face today.  I have to find a way to deal with all of this better than I have been.

Some days I feel so strong.  I feel like I can handle anything.  Then other days it will only take a feather to knock me over.  On most days I will think, how could I even think about such a thing?  But then everything will just come crashing down again.  I don’t feel like I hold things in.  That I don’t allow myself to feel.  But my husband and therapist say I do, then everything comes down at once.

Things will get better for a while now.  I know they will.  But I really need to be careful and not let things build back up like this.

Stuart and I are going to work very hard to find an outlet for us.  To try to not stay cooped up in the house all the time.  We need to find a place where we feel safe, welcome, and where there are people who have similar interests that we do.

Please, don’t worry about me.  I’ll be fine.  I have a good support group to help me.  I’m only writing about this, in case it may help someone else who may have some of these feelings.

Accomplishments

On By WendyIn Life, Medical Tests, Meniere's Disease1 Comment
Sandy out in the snow.

The last couple of days have been filled with accomplishments.

  1. The biggest one first. Yesterday I didn’t have to take Valium or Phenergan all day long.  (I did take it once today, but only once, I’m not positive I needed them, but I was starting to feel a little dizzy and better safe than sorry.)  That’s a huge improvement.
  2. I made dinner last night.  To read all about what I made, check out my blog post on Wendy Cooks.  (a little teaser here: it includes Acorn Squash and wild rice.)
  3. I cleaned up the kitchen today.
  4. I completed messed up the kitchen again today.
  5. I made experimented with dinner again, and made something that I was very pleased with.  I will post about it on Wendy Cooks tomorrow.  (Yes, I made Pesto out of Kale! can you believe?  I served it over penne pasta and grilled chicken…you must see the photos, I promise I will post them tomorrow.)
  6. Stuart talked to Dr. Gray today, and she is setting up an appointment for me to come and have another lumbar puncture (also known as a spinal tap.)  She mentioned that my pressure may still be a little high, but the Diamox is just too strong and they might put me on Topamax instead.  Stuart mentioned that my psychiatrist just put me on Topamax, and she thought it was interesting that within the past few days I’ve started feeling better.  They are now taking me off of the diuretic that I’ve been on from Dr. Kaylie.  (I feel like such a trial and error patient….let’s see if this works…nope? well how about this?…a little…well how about this….)  I guess we’ll see what the lumbar puncture says.

When I look at my little list it doesn’t look like I really got all that much accomplished, but I really do feel like I got a lot done.  I didn’t have to lie still on the couch pumping in drugs praying not to throw up.  I even let the dog out a few times and didn’t have to call Stuart down from work to do it.

Oh, and we had another winter storm here last night.

This winter has been very unusual here in Durham, NC.  It’s never this white.

PFAM Blog Carnival – Guilt

On By WendyIn Disability, Meniere's Disease5 Comments

Drowning in Guilt

Patients for a Moment is a patient-centric blog carnival revolving around those living with chronic illness. Twice a month, bloggers are encouraged to tackle the theme with their own unique voice and situation. Those effected by chronic illness – doctors, caregivers, friends and family members are also thoroughly encouraged to participate!

This month Glass of Win is hosting and her theme is : GUILT.
You feel it, though you know you shouldn’t. In what ways, if any, does guilt come into play in regards to your illness and the way you must live your life? How do you try to overcome feelings of guilt?

One of the definitions Wikapedia gives for Guilt is: a cognitive or an emotional experience that occurs when a person realises or believes–accurately or not–that they have violated a moral standard, and bear sole responsibility for that violation. It is closely related to the concept of remorse.

The definition that Webster’s gives that I think fits most here is: feelings of culpability especially for imagined offenses or from a sense of inadequacy : self-reproach

My disability is pretty hard to deal with sometimes, but the guilt that I carry around because of it is stifling.  Most of my disability is invisible, and that makes it harder, but I don’t think it makes it less real.  What makes it most difficult for me is being such a burden.

Yes, as the definition points out, I realize this guilt is mostly for imagined offenses, but it is very real to me.

I have this weight that is just bearing down on me every day when I think of how much I can’t do that my husband must now be burdened with.  Most days he has to do all of the house work, he often has to take care of my personal needs, I can’t drive so he has to do all of the shopping, take me to my doctor’s appointments, pay all of the bills, plus he has a full-time job.  I feel like I’m a useless husk of a human being, I can’t work, I often can’t even do for myself, what am I contributing to this life?  How could I not be drowning in guilt?  It is suffocating.

I used to be the friend who was there when others needed me.  I would bring a friend dinner, help clean their house if they were ill, help out when they were pregnant (or right after the baby was born)….now, I can’t do any of that.  I feel guilty that I often can’t even go to a friend’s birthday celebration.  When my husband is sick and I can’t help him, like he has helped me so many times, the guilt is nearly over powering.  (thankfully, he doesn’t get sick very often, and when he usually likes to just sleep.)

It’s funny, but one of the biggest things I feel guilty about is when I can’t cook dinner.  I know my husband doesn’t like to cook.  And I have celiac disease so it’s hard to eat out, plus we are trying to save money and not eat out as much.  We also hate to get things to go, all that wasted garbage that they send your to go things home in, it’s just such a waste.  More guilt.

I will often have a few days where I’ll feel better and I can get a few things done, and I’ll buy some groceries and start meals.  Then I’ll get sicker, and some of the food will go bad, and I feel guilty about that too.

How do I handle the guilt?

I go to therapy!  Actually, my husband and I go to therapy together!

My therapist keeps telling me that guilt is a useless emotion unless you are doing something that is destructive to yourself or others that needs to be stopped (like abusing drugs or alcohol, breaking the law…).  Then guilt can be a good thing and help you to stop, other than that, it’s useless.  I keep trying to remind myself of that.  I should not feel guilty for things I can not control.  I need to give myself a break, and I need to learn to ask for help.

My husband tells me how grateful he feels that he can be here to help me.  That makes me feel so wonderful that I have a husband that is so selfless and loves me so much.  But then I think, how many years can he put up with this?  But you know, that is not for me to decide.  He’s here, he loves me, he wants to help me.  If he needs help with this, he needs to ask, I should not feel guilty because he doesn’t ask for help.

My friends seem to understand.  Or at least they try, and the ones who don’t, well, I’m not too sure they should be my friends.  I would be there for them, if they don’t understand and won’t stand by me, then maybe they aren’t the people I think they are.  Some people are surprising me.  There are some people who I didn’t know would step up and be my friend through this and they are there.  I’m proud to say they are my friends.

I work hard when I am feeling well to make up for when I’m not.  I often feel better in the morning, so I’ve started cooking a lot more in the slow cooker, I just throw things in it in the morning, and it’s done that evening.  On days when I feel better I clean a little.  I don’t take on a big task, but I get something done.  (My husband argued with this point, but I said I’m trying to get better about this.  I used to start way more than I could finish, now I try to do a little at a time, so I can feel like I accomplished something.)

I’m learning to vent more of my emotions on the computer, this blog and other people’s blogs have helped a lot, so I don’t have all this guilt building up with nowhere to go.

I’m finding other people like me who have similar feeling and we are learning together that we need to not be so hard on our selves.

Even my doctor said I need to give myself a break.  This is hard.  I’m working hard even when it doesn’t seem like it.  I needed to step back from the situation and look at it as if I was a friend of mine and think about how I would feel about me.

I would think “Hey, she’s a pretty brave person who is doing her damnedest to make the best out of a very hard situation.  I don’t want to get in the way, but I wonder if she needs help?”  I know a lot of people are very busy and wouldn’t even think about helping.  Others are so afraid they will be bothering you.  But some people really would like to help, they just don’t know how.  I need to learn how to ask for help when I need it, and not feel guilty about it.  (I really hope my husband does too.)

The problem is a lot of people will say, “If there is anything I can do, just let me know.”, but they don’t really mean it.  What they mean is, “If there is anything I can do that is convenient for me on that particular day and time I will be happy to do it, but other than that…..well….not so much.”  Remember, when I said that I’ve found out that there are some people who probably aren’t my friends anyway….well, I don’t feel guilty about that.

This post is linked to Glass of Win for the PFAM Blog Carnival