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.)

ABC’s of Disability – B

On By WendyIn Disability2 Comments

With the strange moods that I’ve been in lately trying to think of a specific word to focus on for this weeks ABC, was really hard.

There are so many words that I could think of that start with “B” that I could turn around to fit in to my life with a disability.

  • Body – well, it’s pretty obvious where I could go here.  Huh?
  • Beauty – having a disability sometimes makes you stop and see things differently than other people see them.  Sometimes you see the beauty in things that other people are simply in such a hurry they just don’t notice.  Try to notice something Beautiful today.
  • Bath – this can sometimes be very difficult for me.  I love taking baths, but sometimes it’s hard to get in and out of the tub, and sometimes the water actually makes me have a vertigo attack.  But other times, a bath is one of the most wonderful things in the world.  It’s relaxing, it’s warm, it smells nice, and I just feel safe (well most of the time.)….oh and you can have another “B” – Bubbles!
  • Break – I seem to break more things, and since I have a chance of falling, I have to be careful not to break more of me.
  • Books – I love to read and escape in books to help me deal with all of this, but I also like to read as much about my disability as I can and how to get healthier.
  • Bonkers – Yes, being disabled can make you feel Bonkers sometimes.
  • Brilliant – I keep meeting some of the most brilliant people ever!  And I don’t mean my doctors (although some of my doctors are pretty smart.)  Other disabled people I meet are absolutely brilliant! They handle so much, and yet find the time to help others.  I’m often very awed.
  • I think that should bring me back to Bubbles.  We really should take more time to blow bubbles.  They are just silly little things and they make us laugh, (especially if you have a child or a cat).  Or take a nice relaxing bubble bath….oh I think I’ll go and take one of those right now.

I realize this wasn’t a very serious subject this week, but I think I’ve been serious way too much lately.

Oh my, my husband just informed me that I forgot one very important “B”

Booty – It’s very important to remember that just because you are disabled doesn’t mean you shouldn’t be getting a little booty.  *wink* (sometimes we may have to be a little more inventive, and we may not be able to be as spontaneous as we’d like, but it’s still very important for us to remember that we are still desirable and sexy.  And we need to make sure our loved ones know we feel that way about them too.)

So there you have is my week worth of “B”s.

Anything I forgot that you’d like to add?

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.

For only having 3 hours of sleep I’m doing pretty good.

On By WendyIn Chronic Illness2 Comments

A little tattered around the edges, but all in all, not bad.

I could not sleep last night.  Hopefully, that will be rectified soon.  All day today I’ve been feeling like I’ve been right on the verge of an attack.

We went out this morning.  (I was determined.)  To go to the Farmer’s Market.  There were icy patches, so I stayed in the car and just let Stuart run up and get our pre-ordered box of goodies from one of the local farms.  (Carrots, Radishes, Italian Leaf Broccoli, and Spinach)  Next stop, pick up a prescription for me at a local pharmacy. (Not the pharmacy we usually use, but my insurance won’t cover one of my prescriptions and the drug company has a plan with a certain kind of drug store and if I buy from them it only cost me $60 a month instead of about $200.  I’ll buy from them.)  Then off to breakfast.

After a small breakfast we went to the library, and I was running to their bathroom…I just love having to be close to a bathroom all the time.  We dropped off read books, and picked up ones that were on hold.  I started feeling funny so I took a Valium and Phenergan.  (and dropped all of the pills in my little holder all over the floor right were people have to walk through to get in the library, *a thank you to my lovely husband for picking them up for me.*)

Then off to our regular pharmacy, but as we pulled in I said, “I need to go home.”  Yes. the world was starting to spin.  We got home, got a suppository, and settled down.  All was decent with the world.

However, about 7pm I started getting a migraine.  Guess what we were picking up at the drug store?  You guessed it, my migraine pills.  So now, my head hurts.

I hope I can sleep.

Stuart and I had a long talk about what happened yesterday.  I feel much better about things.  I think he does to.  We have to work hard to not let things escalate to that point again.

Sometimes in the middle of the night I will wake up and write.  Well, the other night I wrote about living in fear.  This disease leaves us living in fear all the time.  We aren’t just afraid of an attack.  We’re afraid to make plans, we’re afraid to be happy because it could be taken away so quickly….I’m just so afraid.

Well, I’m not going to be locked in this cage with fear any more!  Yes, I will respectfully be afraid of an attack, but I have symptoms that tell me one is coming on.  Why should I be so afraid when I’m not having symptoms?

I need to make the most of my Good Days!  A lot of the time I use those days to catch up on house work.  Well, that’s all well and good, but I need to start having fun.  And Stuart has decided that on my really good days he’s going to take time off work and we are just going to go and spend the day together.  (he has a lot of vacation time built up, and if he wants he can work odd hours or on the weekend to make up time.)  The point is, we need to start taking time for us.

I’m also thinking about getting a maid to help out with the house.  We usually have a service come in and help with spring and fall cleaning, but I’m thinking I may need more help than that.  I have nearly $3000 saved from birthday and Christmas gifts, I think I’m going to take some of it and get a maid to start coming once a month.  This would take a huge load off of my mind, and it take a lot of responsibility off of Stuart.  (I think he will agree.)

So considering the fact that I’m running on 3 hours of sleep.  I think today is looking pretty good.  Tomorrow, has to be even better.

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.

I think I got Glutened.

On By WendyIn Celiac Disease, Gluten-FreeLeave a comment

It’s so hard to know for sure, with all the GI trouble I’ve been having, but this is different.

Last night after dinner.  Which was very good, by the way, my stomach started hurting so bad.  I ate a brand of “Gluten Free” pasta that I don’t normally eat.  I have eaten it before, but only once or twice.

I read on the internet today and it said that they make their gluten-free pasta in the same facility that they make their regular pasta.  It does not say that on the package.  It doesn’t even say that on their website.  I found it on a Celiac site.  I tried to contact the company and the Contact Us link wasn’t working.  I really thought this was a reputable company.  Today, I’m questioning that, because I feel really bad.

All night, I kept waking up with my stomach hurting and with horrible gas pains.  I told Stuart that I felt like I had piranha in my stomach trying to eat their way out.  Pepto was my very good friend last night.  I must say, I didn’t get a lot of sleep.

Today, I still don’t feel good, and I can’t stay out of the bathroom.  This time, it’s very painful.  My stomach really hurts, like it used to before I stopped eating gluten.  My head hurts, and I ache all over.  Yes, it sounds like I have the flu, but I’m not that sick.  I just feel like crap.

I’m also very afraid to eat, but if I don’t eat, my stomach hurts.

I hate getting glutened.

Tomorrow I should feel much better.  That’s always the up side of this, it does go away.

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