Category: Chronic Illness

Living with Bipolar Disorder.

On By WendyIn Chronic Illness20 Comments

I would like to write more about my other chronic illnesses, not just Meniere’s.  It’s just that Meniere’s has ruled my life for a long time now.

Today, I’d like to discuss what it means for me to live with Bipolar Disorder.

First I’d like to explain there are different types of Bipolar Disorder.  (Formally known as Manic-Depression)

Bipolar Painting - J FLoRian Dunn artist (http://fineartamerica.com)

The following definitions of the different types of Bipolar Disorder is copied from the Mayo Clinic website. You can find the entire article here: http://www.mayoclinic.com/health/bipolar-disorder/DS00356  It’s a very interesting article if you want to know more about Bipolar Disorder.

“Bipolar disorder is divided into several subtypes. Each has a different pattern of symptoms. Types of bipolar disorder include:

  • Bipolar I disorder. Mood swings with bipolar I cause significant difficulty in your job, school or relationships. Manic episodes can be severe and dangerous.
  • Bipolar II disorder. Bipolar II is less severe than bipolar I. You may have an elevated mood, irritability and some changes in your functioning, but generally you can carry on with your normal daily routine. Instead of full-blown mania, you have hypomania — a less severe form of mania. In bipolar II, periods of depression typically last longer than periods of hypomania.
  • Cyclothymic disorder. Cyclothymic disorder, also known as cyclothymia, is a mild form of bipolar disorder. With cyclothymia, hypomania and depression can be disruptive, but the highs and lows are not as severe as they are with other types of bipolar disorder.”

There is much more to know about Bipolar Disorder, but I won’t bore you with tons of details when you can look them up.  I know most of my readers like to research things.  This post is more about my experiences being Bipolar.

I have Bipolar I disorder.  When I would have an episode, it disrupted every part of my life.  I lost jobs, relationships, once I lost the place I was living, and I almost lost my life more than once.  During my episodes I would have periods of lost time.  Once, I couldn’t remember almost a month of my life.  Most of the episodes when I lost time were episodes of mania.

The depression episodes, sent me into the deepest darkest caverns of despair.  I was convinced no one cared, and the world would be better off without me in it.  I was in such agony, and couldn’t see any way out of it.  I thought of suicide many times, and attempted it more than once.  One time I came very close to succeeding.  I was involuntarily admitted to a mental hospital for nearly 3 weeks.  My best friend of 9 1/2 years and roommate decided she couldn’t take it and moved out the day I was released from the hospital.  I lost my job.  There were a few jobs where I lost control, was convinced my co-workers or boss were out to get me, and I walked out.  With nothing to fall back on.

The mania was at times sweet.  (this causes many not to stay on their medication, they miss the high of mania)  I would have creative binges.  I would paint for days on end, often not eating or sleeping.  But it had extreme down sides.  While in a manic state I didn’t think anything could hurt me.  I tried drugs, I had risky sexual exploits, I spent money I didn’t have…  During one manic episode I bought a Jeep, had the people at the dealership take the top down before I left the lot, and then drove to Washington, DC to meet someone I’d only talked to on the phone, or emailed.  He did work for the same company I did, but in a different city.  No one knew where I was going.  I was lucky, when I think of what could have happened, I shudder. (BTW – it took me a long time to figure out how to put the top on my Jeep) I would get credit card bills for things I didn’t remember buying.  I loved to treat people when I was manic, and I loved to buy gifts.  I would meet people who knew me, but I didn’t remember them.  By the time I found out I was Bipolar, I was facing bankruptcy.

At times I did what’s called rapid cycling.  I’d be low one moment and high the next….over and over.  It was mind boggling, and very scary for others around me.  I couldn’t keep friends.  Mania can turn to anger quickly.  I pushed people away, sometimes during awful fights, when I’d say things I didn’t mean.  I was cruel.

While depressed I was convinced things would never get better.

I was originally diagnosed with Bipolar disorder in my mid 20’s, after a suicide attempt.  Then a year of two later, I was told they were wrong, all my symptoms were caused by hypoglycemia.  Depression set in and  I was then diagnosed with clinical depression, and put on antidepressants.  These sent me into a major episode of mania.  I was taken off the antidepressants and told I had anxiety disorder, with another medication change, and another attempt at suicide.

This roundabout when on for some time.   One night, I cut myself numerous times trying to get up enough nerve to cut deeper.  Instead I called a suicide help line, and ended up being committed to a mental hospital.  This was the best thing that ever happened to me.  Even though I was once again misdiagnosed while I was there, with Borderline Personality Disorder, the group sessions were very helpful and I was now in the system.  This helped me find a therapist and psychiatrist who understood, and helped me.

After getting on the right medication, my life began to normalize.  However, I had learned behaviors to overcome.  I’d been undiagnosed for so many years, I only knew how to react to situations as I would before. I over reacted to everything.  Not to the extreme I would before, but I only knew to run or fight when confronted with strong emotions.  I did not know how to have healthy relationships.  Finally, after many years of therapy I feel I am the person I want to be.  I don’t blow up (most of the time).  I have good relationships.  I understand that much of what I did in the past was out of my control, but how I live my life now is my responsibility.  And that’s OK with me.

I wanted to add, this is one reason having PMDD/PMS disturbs me so much.  I’ve worked very hard to understand my emotions, and control them.  When I have these hormonal symptoms I again feel out of control, often so quick to anger it scares me.   Scares me more than I can explain.  I never want to the person I was before.

As of this writing, I’ve been stable for over 15 years.  (with only a few minor episodes when my medication needed adjusting.

I started this post on January 3rd.  I do not hide that I’m bipolar.  I’m quick to talk about it, to share my experiences so others may get help.  However, this was a difficult post to write, remembering who I used to be, the people I hurt, the self-destruction…  Mental illness and suicide still carry a lot of stigma.  Let’s start talking about it.  We need to make sure people are not afraid to seek help.  We need to help everyone understand that people with mental illnesses are still people.

Round and Round we go, when it stops, no body knows

On By WendyIn Chronic Illness16 Comments

Yes, after writing such a positive post about all the things I’ve been doing lately, I’ve spent the last two days in bed.

Oh my aching ear! image courtesy of dreamtime.com

I have an ear infections, AGAIN!  At least I’m pretty darn sure I do.  The left ear, the one that I recently had surgery on, started draining more (it has been draining since surgery, this is normal, but it was clear and getting to be less and less.  It drains out of my ear because I have a tube in that ear.)   It started hurting, and the consistency of the stuff draining out looks like puss.   I’ve been running a low-grade fever, mostly at night.  And I feel very icky!!  Ugh!  So the world is very off-balance.

Please, don’t think ill of me, but I have about half a bottle of the Cipro Ear Drops my doc gave me last time, so I am treating myself.  (I would normally never do this, but I’ve had so many ear infections, I pretty much know that’s what it is.  I know…I’m recovering from surgery and should get it checked, if it’s not better Dr. Kaylie will see it on the 30th.)  I just didn’t want to deal with making an appointment, and going to Duke, ect ….ect….just days before I have to go in for blood tests, an MRI, and visit Dr. Kaylie.   Also, I didn’t want to suffer all weekend when I could get the medicine started.

Human Gyroscope (image courtesy of http://www.schriever.af.mil)

Yesterday and today have been a bit rough.  I feel like a human gyroscope.  My head feels like my brain is lose and moving around.  I was sitting on the toilet last night and the tile on the floor wouldn’t keep still.  They kept going round and round in a clockwise spin.  Ahhhh!  I hate this, but at least I’m not throwing up for hours on end.

The weather has also changed, so that is a contributing factor and I’m fighting migraines.  To top it all off, I’m just about to start my period.  That always throws a wrench in things.  Not a happy girl right now, but I know it will get better, so hope is always on the horizon.

Does anyone else have a really hard time going to sleep because of spinning?  Even when I’m not feeling off, when I close my eyes and try to go to sleep I will start to feel like I’m moving.  I jerk, and have to calm myself.  Over an over…I’m actually afraid to try to sleep now.  Many nights, I don’t get to sleep until absolute exhaustion overcomes me.  Normally between 3am and 6am.  Last night was a 6am day.

However, another obstacle to my sleep is pain.  Headaches, muscle aches, hips…ect.  It’s all worse now that the weather is colder and it’s raining.  But I can’t live on pain pills.  What to do, what to do?  We know sleep aids just don’t work for me….I’d really like a good nights sleep, preferably on a regular basis.  Exercise would probably help, but that’s just not possible right now.

Whew…a lot of whining today huh?

Don’t worry, this is just a little bump in the road, one step at a time, one day at a time….the sun is right over the horizon…I can feel it…and know I’ll be back to my normal positive self in no time.

**Please note, I have been reading all my friend’s blog entries, thanks to my new phone, I can read your blog entries anywhere.   I really need to acknowledge a couple of posts here, but I haven’t been feeling up to par, and simply haven’t been on the computer as much.  I’ll try to catch up on everything soon.  But I may miss commenting, please don’t be offended.  I’m still reading, and thinking of each and every one of you.

SOPA and PIPA dropped by Congress! And Good Days.

On By WendyIn Chronic Illness14 Comments

Yay!  The Blackout worked!!  SOPA and PIPA were dropped by congress today!!!  I’m so thrilled!

I’ve had some good days recently, unfortunately today isn’t one.  I woke up with a migraine today that has left me feeling icky.  Meds worked but left me feeling a bit off….then headache returned.  It’s minor right now, waiting to see if I need more meds.

On to the Good Days!

This photo is not enhanced. The sky really was that blue!

Remember when I said, I was going to take advantage of every good day and live it to the fullest?  Well, I’m keeping my promise.  Now, what one might call living life to the fullest, and what I call it, may be vastly different things.  Just remember for about 6 months I was barely able to get out of bed, so the small things mean the world to me!

Has a wonderful day earlier this week, just enjoying the unseasonable warm weather.  As you can see from the photo above, taken from our back yard, it was a beautiful day with a bright blue sky.  This color sky is unusual for our neck of the woods, I haven’t seen a sky this blue since moving from California.

On Wednesday had my eyes examined, and have new glasses on the way!  Afterward, I didn’t want to go home, so Stuart and I went to the mall.  Just window shopping really.  He wanted to try on some shoes he was interested in to decide if he really wanted them.  He loved them!  So, surprise!  I ordered them for his birthday.  Of course, they arrived today, and I couldn’t wait to give them to him…so he got his birthday present early!  (his birthday is February 6th, shh, don’t tell him, but I have another surprise planned.)  He’s so thrilled with his shoes, he’s been wearing them ever since he opened the package.

We walked all around the mall and had a nice afternoon together.  That night, I was in much pain.  My hips and lower back…oh my goodness.  I took a hot bath with Epsom Salts, and felt better, but still had a hard time sleeping.

I’ve been in the kitchen quite a bit this week.  You all know how much I love that!  I have a lot of things to add to Wendy Cooks!  We bought some plain ground pork and I made Italian Sausage without onion or garlic!  I cooked that with potatoes, and kale.  What a nice dinner.  The next day I made Sticky Pork Chops.  Served those with roasted green beans and rice.  Stuart’s feeling spoiled.  He’s so happy I’m cooking again.  We also made a big pot of chicken stock. (Stuart actually got this one going.)

This is Sandy and Max while we were traveling across country. See how well they do in the car together?

Yesterday we took the furry babies to the vet.  Sandy really just came along for the ride.  She did have a pedicure, but the main reason she was there was to calm Max.  It’s so funny, Max really loves his dog.  If we take him to the vet, he does so much better if Sandy is with him.  Max got his annual check-up and shots.  Our vet is so in love with our pets.  Sandy is referred to as the “Wonder Dog!” If you read my blog regularly you probably know this, but Sandy is 19 years old, she has bladder cancer, cataracts have taken most of her vision, and she’s very hard of hearing.  In July of 2010 we were told she had probably 3 months to live, but she may last up to a year.  Well, she’s still going strong!  Still runs and plays…she acts like a dog less than half her age!  Our pets also have very good temperaments.  They don’t fight the vet, as long as they are together, and mommy is near they have no troubles.

Last night I had a challenge.  We took a friend out to dinner who is moving away for a new job.  She wanted steak, so we went to the Texas Roadhouse.  If any of you have ever been to a Texas Roadhouse, you know how noisy it can be.  Normally they seat us in a booth with a very tall back, it’s much easier for me to hear if there is no noise behind me.  This time, we sat in a booth with a low back.  It was a challenge for me to hear.  Stuart sat to my right, on my hearing aid side.  Our friend sat across from me.  Luckily, she has a voice I hear pretty well, and she remembers to look at me and speak clearly (most of the time).  I think I only had to ask her to repeat something 3 times.  Yay!  Stuart on the other hand, I could barely hear.  It’s amazing how much I depend on lip reading (they call it speech reading now, I don’t know why).  We stayed at the restaurant for nearly 3 hours.  So,I feel I passed this challenge fairly well.  I was so excited!   But I know it would not have gone as well with more people, or with someone who has a voice with a frequency I can’t hear well.  (I’ll take the victory though! Eating out with a friend, something I haven’t done in a VERY long time.)

Unfortunately, the GI stuff hasn’t gotten better.  Looking forward to find out what the dietitian has to say about getting the Fructose Malabsorption under control.  I’ll be seeing her Wednesday of next week.

Whew, today is a bit of a rough one.  My head hurts.  Think I need to get off of the computer and take some more pills.  I planed on making Spaghetti tonight with the rest of the Italian sausage.  We may have left overs instead.  Unless I can talked my dear hubby into making the spaghetti.  It’s times like these I wish I could just eat sauce from a jar, but alas, it’s not to be.  Plus, homemade is so much better!

Dizzy Day – and an update on SOPA and PIPA.

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

I should have known better.

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

Rozerem Ad

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

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

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

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

Image credits: hikingartist.com

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

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

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

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

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

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

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

Good Days, Wonky Days, and Great News

On By WendyIn Chronic Illness13 Comments

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

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

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

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

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

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

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

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

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

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

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

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

 

Hard to believe it’s Winter.

On By WendyIn Chronic Illness16 Comments
Sorry, Not an actual photo of us, but I'm sure you can feel of the sensation! Whee!

On January 6th, and 7th, we went driving around in my Little Yellow Bug with the top down!  That’s right, the convertible was being used with the TOP DOWN, in JANUARY!  Woot!  Last winter was full of snow, and rain, and ice…and well it was just miserable.  Much colder and much more snow than North Carolina normally has.  However, if there is one thing I’ve learned about living in the South East, weather is anything but normal.

This winter has been mild so far, just a few freezing days, I think I could count them on one hand.  I’m loving it, but it’s odd, even for N.C.  We will often have a warm patch in the winter, but this is like Spring.  The plants are so confused.  My herb garden has new growth, my neighbor’s Irises are coming up, yes, the people and plants alike love this weather, but I’m afraid the plants will suffer greatly when the freezing days arrive again.  It looks like it will be cloudy and/or raining for most of the week.  I bet it turns cold after that.

Pink Wildflower from my garden 2011
I took this photo from our wild flower garden, Fall 2011

I’ve been feeling better than I did before the surgery, some days I feel really good!  Like yesterday, it was a good day.  We had to do a little shopping, so we put the top down, and took the long way through the country to the store.  It was blissful.  We came home and I worked in my studio for an hour..maybe two.  Earlier in the day I threw some things in the Slow Cooker, so I even made dinner!

I’m still having a lot of GI issues.  I can’t figure this fructose thing out I guess.  I finally found a book I’ve been told will help me so very much!  The book is not available in the U.S. (at least not yet.)  It was published in Australia.  I started to give up and order it from Australia, but it would have cost me close to $70 with shipping and tax.  I just couldn’t do it.  Finally  I found the book at a used book store on-line, thanks AbeBooks.  For less than $45.  They only had one copy.  I snapped it up!  So I should get it in a couple of weeks.  I also found a nutritionist who is “well versed” in Fructose Malabsorption and the low FODMAPS diet.  Woo Hoo!  Finally!  I may start seeing her later this month, or early next month.  I want to see what the book says first.  This running to the bathroom 6-10 times a day is old!  I’m really tired of my GI system just refusing to work right.  **TMI time…I had a rush moment to the bathroom today, I’d already been 4 times, this one was very loose and black…yes, black.  Scared the crap out of me (pun intended) .  I thought OMG I’m bleeding internally.  Then I remembered I took Pepto Bismol last night, a bit more than I intended to.  Please, if you  take Pepto, remember it can turn your stools black, and your tongue a funny color too, but I’ve only had that happen once.  So don’t let it scare you….like it seems to always catch me off guard.

Today,  I have Slosh Head.  I feel stuffy, and woozy.  I’m nauseous most of the time lately.  If I’m eating, the nausea is relieved, but shortly after I eat it returns.  ick.  But today is worse.  The tinnitus is screaming, my hearing is down!  (I only heard 3 dings..barely..when I turned my hearing aid on, I normally hear 5…they are different frequencies, so I’m not hearing some of them)  The TV sounds tinny, Stuart sounds muffled.  I just don’t feel good at all today.  I feel like Mr. Meniere’s is battling with Allergy Man and Human Barometer is getting his licks in too!  All inside my head..and tummy!  Just ick.

**GREAT NEWS**  Now the reason I can even consider spending money ….Stuart has been offered a job!

Actually he’s negotiating with TWO companies.  One is telecommuting, one is ‘local’.  Stuart has asked the recruiter for the ‘local’ job, if they would consider allowing him to telecommute and come in perhaps one day a week.  (commuting to and from Raleigh. the next city over, is not fun!  Rush hour is horrible, he’d spend at least 3 hours a day in his car…plus the wear and tear on the car, the extra pollution, and parking…ect…it all ads up.)  They have until Tuesday to make a decision and an offer, he told the other company he would give them a decision on Wednesday.  They both sound like excellent companies, and Stuart enjoyed his interview with both.  So, either way, I think he’ll be happy.

He’s been out of work since Halloween.  I knew it would be hard to find a job over the holidays, and it was.  But he wasn’t idle.  He sent out resumes…lot’s of resumes, had interviews, sold things on eBay, cleaned out his office, is preparing to sell the other car….he’s been a busy man…plus taking care of me wasn’t easy right after my surgery.  I’m actually grateful he wasn’t working for a while there.  Now that the holidays are over, he is in demand!  I know it feels good.  You can tell he’s feeling good about things.

That’s all for now.  I feel like I could just talk and talk.  I think I need to write more than I have been lately, shorter posts more often?  That may be a good idea!

 

The New Year starting out…O! Wow! and Ow! – updated…see end of post.

On By WendyIn Chronic Illness10 Comments
New Year's Eve 2012

If I could feel the way I have since New Year’s Eve Eve, December 23rd, minus the migraines, I would be very happy!

Every day for the past….I don’t know how many…days I’ve woken up with a migraine.  Most days I can take something, and it ebbs enough that I can do something, often I have to take something numerous times a day, but at least it has been tolerable after taking the medication.  Unfortunately, one of my medications, I can only get 18 a month, so if I have to take 2 a day to help with the headaches they won’t last very long.  My doctor said we need to wait 3 months after surgery to start trying new treatments for the migraines.   We need to see what this will do first.  One month down!  Just two more to go!  (this is the first day since the 30th, that I have spent the day in bed.  My head hasn’t eased up much today, for a little bit here and there…like now..but most of the day I’ve spent in darkness with a warm hat on my head (I found this helps, I don’t know why), trying to sleep as much as possible.)

New Year’s Eve is usually very hard for me.  As I’ve mentioned before my mother’s birthday was New Year’s Day, and it hits me hard.  I still miss her terribly.  This year, Stuart asked a couple if they’d like to join us, hoping it would help me get through the rough time, and make things happier.  But I woke up with a migraine from Hell.  I couldn’t stand any light, I was nauseous, and I just wanted to scream!  So we felt we should cancel early, just in case the pain didn’t subside, giving our friends time to make other plans.  Luckily, after much medication, I felt better.  My headache wasn’t gone, but it never is, however, it was much better.

I decided to try to work in my studio a bit.  Something I haven’t done in months.  yay, for milestones!  I got part of my mask painted, thank you Judy, I’m thinking about both my inner face and outer face while working on it.  (if you’d like to know more about this please visit Judy’s blog, Creativity to the Max.)

We decided to have a special dinner that night, one we didn’t have to cook.  So when Stuart went to pick our dinner up, I decided to make it very special.  I set the table all pretty, and put candles on it.  I even got pretty myself.  I put on a skirt and nice top, and even makeup!  Stuart was VERY surprised!  And I have to say, I think that was the best steak I’ve ever had!  We haven’t done anything like this in a long time.  It was very romantic.

It was still 6 hours until midnight, so we thought we’d start a puzzle.  We worked on it for about an hour, then I started to get too sore, and my headache was getting worse.  So we headed upstairs, I took some more meds, and we watched a movie.  By midnight I was feeling good again, and a bit frisky.  (hehehe)  We were watching and waiting for the ball to drop, and I started coming on to my husband….one thing led to another, and we rang in the new year with the Big “O”!  Yes, it hurt, but it was so worth it!  We did elevate my hips a bit, and it helped with the hip pain!  Yay.  (Milestone number 2!)  Now, that helped me emotionally too!

On New Year’s Day it was 65F degrees here.  I knew that temperatures like this would not last long, so I had to get out of the house.  We needed something from the grocery store, so off we went to Whole Foods.  I thought we could get the gluten free bread I like there, but nope.  Every time I go to Whole Foods I’m disappointed.  We started to go to the store we know has it, but it’s more than a 30 minute drive, and I was hungry and getting tired.  We stopped to eat to see if I’d then feel like going, the food was good, but I didn’t feel well afterward.  I don’t know what I’ve been getting into lately, but I’ve been having GI symptoms a lot!

We were both tired, and I wasn’t feeling great, so our New Year’s meal would have to wait.  I can’t have Hoppin’ Johns any more any way…(very sad face).  I can’t have legumes, and black eyed peas are one of the main ingredients…I really miss beans!

Here come another milestone, I cooked on January 2nd!  Stuart helped a little, but I did the main cooking!  So excited, I really like to cook, and haven’t been able to in months!  I made collard greens (a must in the Southern parts of the US, collard greens represent money, so if you want more money throughout the year, you eat collards, another part of Hoppin’ Johns).  But I cooked them a bit differently.  I sauteed them with bacon, Mirin Sauce (a sweet rice wine used in Asian cooking), a little Rice Vinegar, and sprinkled with celery seeds.  They were very tasty.  We planned to have ham, but couldn’t find one that wasn’t way too big, so we cooked up a hot dog for each of us, and I had some left over mashed potatoes.  It was actually a pretty darn tasty meal!  (before everyone with Meniere’s freaks out about how much salt I ate,the bacon was low salt, and so were the hotdogs, plus I only ate one.  However, I’m not sure a low salt diet has helped with my Meniere’s symptoms at all.)

One more good thing happened, but it isn’t finalized yet, so I’m afraid to mention it and jinx it.  (It has to do with Stuart…you can probably guess.)

I started to make up a list of things I want to accomplish in 2012, but didn’t get far.  I realize I can’t really plan much and just get upset when I can’t accomplish what I plan to.  I really, want to lose some of this weight, and be able to exercise some.  This I will figure out how to do!  Even if I get to be just as sick as I was for the past 6 months, I’m going to figure out how to exercise.

As you see at the top, Stuart took pictures of me on New Year’s Eve, when I saw them I cried.  I thought, that can’t be me!  This woman is so overweight, and old.  I don’t want to feel that way about me.  I have to find a way to get my body image self esteem back.  The picture I published at the top was the best.  There is another that I feel shows every hard thing I’ve been through over the past couple of years.  Following you will see a photo of me that was taken just before all of this started happening, and the photo that was taken on New Year’s Eve that I feel, shows the pain I’ve endured.  I’m only showing these to show how much I’ve changed in a relatively short period of time.

**I’d like to say, the weight bothers me mostly because of the added health issues.  I now have non-alcoholic fatty liver, and very high triglycerides.  I will not be able to get control of these until some of the weight comes off and I can exercise.  Yes, my body image has taken a bit of a hit, but my husband thinks I’m beautiful, and desirable so that’s a confidence booster.  However, the fact that I get out of breath so easily, and have a hard time getting up at times.  (the tub is a big challenge.)  With my hip issues, added weight is not a good idea.

Wendy Dec. 31st 2011 -(yes, it's a bit out of focus, sorry)
Wendy - Late Fall 2009

A New Day…A New Outlook

On By WendyIn Chronic Illness10 Comments
A Butterfly for Stuart - by W. Holcombe (all rights reserved)

My dear, dear friends, thank you so much for the very kind words that you said about me after my last post.

I kept reading these comments, thinking…”Yeah, I like that about me too!:  Some I hadn’t thought of, but realized after reading them, that yes, that is a part of me.  It made me realize, I can write the list as 20 things I like about Me.  I just needed a little push to remember some of those things.  Thank you!  And I guess, after this past two years, I needed to hear that there were still some things about me that others think are likable.  Thank You Again!

I sat down and had a talk with myself.  It went something like this….”OK Wendy, you’ve been telling people you will just change your expectations of life, since things aren’t what you expected.  Now, You didn’t mean you’d expect things to be bad…no Mam!  You simply think things are different, and you can work with that.  You are strong, and you can find the light that will lead you out of this tunnel!  So pick yourself up, dust yourself off, and get moving again!  Remember, success is getting up once more often than you fall down.”   (yes, when I talk to myself I have a VERY Southern accent, it comes out any time I get angy.  I am originally from Charleston, SC after all.)

So I made a plan.  I have been so sick for so long, I haven’t been taking the best care of myself.  Partially because I couldn’t for a while, but some days because, I just didn’t have the drive.  I thought, what’s the use, I can’t do anything.  Why get dressed?  Why shower?  Why do much of anything?  Even on the days when I could (Physically)….sometimes I just couldn’t (Emotionally).  After my little talk with myself, I decided, it doesn’t matter if I have nowhere to go, if I can get out of bed Physically, I will take care of myself more.  I will get dressed every day, even if I don’t step foot outside.  If at all possible, I will at least go downstairs to work on the computer and do my artwork.  I will try…very, very hard to get out of the house more often, even if it’s just to walk to the mailbox and back.  And last, but certainly not least, I will try my best to be around people more often.

Pretty big change from my last post huh?  Sometimes I think I need to hit that dark place, to make me realize I need to pull myself out of it.  This was a slow decent to a place I was scared of, and I didn’t like myself one little bit.  A friend of mine once told me that he admired how I could pull myself out of times like these.   It isn’t easy.  (plus I’ve been through a LOT of therapy!)  I have bipolar disorder, I can tell when depression is enveloping me, just as I can tell when I’m starting to fly in with the mania.  My psychiatrist once told me that I was more in tuned with myself than any patient he had, I’m grateful for that.  If I feel I’m swinging one way or the other, first I tell myself…this will pass!  I will NOT feel like this forever.  Then I try some exercises my therapist has helped me with, or I meditate, or I read something I find helps…I try to help myself before things get too one-sided.  If I can’t then I get on the phone and call my psych!  That’s what he’s there for.   Luckily, I didn’t have to do that this time.  My pep talk to myself, the affirmations I got from my friends here, and reading some Buddhist teachings, helped to pull me out of it.  (and I have an appointment with my psychiatrist next week, so I knew if that didn’t work, he would be there for me.)

One day, I’ll write more about being bipolar.  I’m lucky I am stable, have been for years now.  When I feel one emotion going too extreme, I know what to do.  I recognize it and can get help before I get to the breaking point.  However, I had a lot of struggles to get here, and there are many people out there who aren’t as lucky as I am.  I think the one factor that made the biggest difference in my life with this disease, is finding the right psychiatrist and therapist.  I’ve seen a few, but they weren’t a good fit with me.  It’s very hard to understand that when you are ill, but I finally realized if I’m not comfortable with the person treating me, I shouldn’t stay with them.  Now I don’t mean, my therapist said something I didn’t want to hear, so I left.  I mean, our personalities didn’t mesh, I didn’t feel I could trust one of them….have you ever been with someone and they gave you this funny tummy feeling?  Like something just isn’t right?  That’s what I mean, that tells me that things aren’t going to work.  Finally I got a good match, and that made all the difference.

 

So…I took my own advise today, and got up, took care of my personal needs, got dressed, put on make-up!, and then I rested!  Whew, that was a work out!

Hubby needed to run some errands, so I decided to get out of the house.  Today I had the least amount of disequilibrium I’ve had in a very long time!  Mainly only when I bent over, or turned my head too fast.  Luckily, I didn’t do that very often.

We went and dropped off some donations, and I bought a pair of shoes, and a purse at Goodwill for $5.00!!  I love Thrift Stores!!  We went to Michael’s to exchange a picture frame for the right size.  Had lunch out.  That’s always a challenge with my hearing, and food issues.  So we went to a place that has one thing I know I can eat safely, I let Stuart order for me so I didn’t have to try to hear the person taking my order, and we sat where no one would be behind me, and a little away from as many people as we could.  It made things much easier.  I found if there is a lot of noise in a place I get dizzier.  On top of the anxiety I’m feeling because I can’t hear, it really makes it hard…but I did it!  We also dropped by the grocery store for a few things.   A busy day.  However, we took our time.  I took rest breaks, and I don’t feel I over did it!  We’ll find out tomorrow.

Once more I want to thank you all for being so kind, and helping me out by telling me things you like about me.  Please know you are very special people.  Look at how you reached out to help me!  How you support me and others.  Please know, that you are loved.

My this New Year bring all of us greater health, happiness, prosperity, and love!  (and anything I may have left out that you are wishing for!)

Cheers!!

Dark Days…I’m having a rough time…and a request.

On By WendyIn Chronic Illness17 Comments
Darkness and Disequilibrium Envelope Me

I’ve started a number of posts lately and haven’t finished any.

I’m having a rough time lately.  I feel the darkness creeping over me, sucking the hope out of me.  I’ve had this happen before, and I always pull myself out of it, but it’s hard.  Right now, I just wish I wasn’t.  (Don’t worry I’m not suicidal.)  Sometimes, I just wish, I didn’t exist.

We watched It’s a Wonderful Life on Christmas, one of the only true traditions we have.  We usually watch it on Christmas Eve, but we had a friend come over on Christmas day and we like to watch it together.

This movie usually gives me hope.  It makes me believe that I could have made a difference and not known it.  Just maybe I’m important in some way, that some things would be worse if I hadn’t been born. This year part of this movie hit hard.  One of the last parts of this movie made me so very sad.  Clarence, the angel, leaves a book for George Bailey and in it he writes, “Dear George, remember no man is a failure who has friends…..”  George was surrounded by people who loved him, who he had helped in so many ways that they were all willing to help him, without even knowing what caused his troubles.  (if you haven’t seen the film, George finds himself in a huge mess and considers suicide.  Clarence, shows him what life would have been like if he hadn’t existed.  It was a pretty grim picture.  After he sees this, he wants to live, then he finds out that his friends all want to help him.)

I have been feeling I have a lack of true friends lately.  Friends I can really call on.  I know I have a few.  However, not that many. Does that make me a failure?

I’ve had a couple of friends this year tell me I haven’t been a good friend.  That I’ve ignored them and haven’t worked on our friendship.  That was very hard to hear.  Especially from one of them.  I felt I’d been there for her over and over, we had been friends for years and years.  (though not always in touch)  All of a sudden, she felt she was giving all the energy in the relationship and I wasn’t giving anything.  I think my illness, and my depression about it sometimes scared her.  But I don’t think that was all.  We are back in touch, but it’s not the same.  The incident has never been mentioned.  The other, I could understand how she could see things that way.  But it was never intentional.  And now, I feel odd about our friendship, and don’t know if it will survive.

I’m lonely, but I have a hard time being around some people.  Losing my hearing is hard.  Often, I’d rather be lonely alone, than in a room with people whom I feel isolated from because I can’t hear them.  I do well one on one, but in groups…it’s so hard.  I’m also having a rough time with envy.  I want to be happy for my friends, and experience joy that they can do so many of the things I can’t.  Sometimes I can do this, other times it just eats me up.

There are so many things that I’ve been having a hard time with.

I was reading back over my blog from this year, and my journal from last year, and found I’ve been on a sickness merry-go-round that goes something like this….hell – much better – hell – much better….over and over.  I’ve been given hope and felt better and then had the rug pulled out from under me so many times I’m dizzy just thinking about it.  (pun not really intended, perhaps I should say, dizzier?)

I keep thinking, even if this surgery ends up working, when will it stop.  Will I have 2 months…4…12???  (Dr. Kaylie said to give it 3 months before we really judge it.  This really takes a long time to heal.)  When I had this on the other ear, I had 4 months vertigo free, then I had a spell of 11 days with a Meniere’s attack.  Hearing down, tinnitus up, and vertigo on and off…for 11 Days!  But caused by the other ear.  Then I started in the Cerebrospinal fluid study, and things have been up and down since then.  For over a year.

In the past 2 years I’ve had 9 decent months.  Not a bad number, but they weren’t great of course, I’m just talking 9 months where the Meniere’s was better.  5 months where the headaches were better.  And very, very few where my GI system was better.  I even had a few where the pelvic and hip pain were better, but not many.

Speaking of GI issues.  I’m still having diarrhea very often, and have gained so much weight.  I’m not keeping much food in me, almost every time I eat I’m running to the bathroom.  Yet, I’ve gone from 147 lbs in the beginning of 2010, to almost 200 lbs. now.  (and most of that I gained in 2 months time, in the fall of 2010)  I hate to look at myself, and the idea of people seeing me like this, or having my picture taken terrifies me.  I grew up in a house where my father would often tell me I needed to lose weight, and would talk about others who were, what he considered, over weight.    I knew even if he didn’t say it to my face, he would be calling me fat behind my back.  (this caused a teen eating disorder)  I haven’t seen him in long time, and won’t now.  The idea of it, just hurts, I could not bear the thought of being told I’m fat, or knowing he would be telling others how fat I am.  (BTW, this is not a man who has been in shape for as long as I can remember.)

So to sum that up, I do not have the Fructose Malabsorption under control.  Elimination Diet started today!

We watched Despicable Me on Christmas Eve.  One of our favorite movies.  I think this was the 4th time we’ve seen it, and still laugh so hard.  But it also makes me cry.  This time more than usual.  When he falls in love with those girls, and they become a family, it’s so touching.  All I could think about was the fact that earlier this year we were making plans to become foster parents.  Now we’ve given that dream up.

I’m still stuck in bed most of the time.  When I get up I get the worst headaches!  Also, I feel like I’m on a very rocky boat most of the time.  It’s horrible.  I’ve felt unsteady for a long time, but now, I walk a bit like I’m drunk.  I have to walk very slowly.  To top it off, I feel sea sick.  Strangest thing about that – the only time I’m not feeling nauseous is when I’m eating.  (is that weird or what?)

This is also a difficult time for me because my mother’s birthday was New Year’s day.  It was such a special time when she was alive.  No matter where I was, at some night club, or party, or what ever….as soon after midnight as I could I would call my mom and wish her a happy birthday!  I remember one year I was at a bon-fire, and I had to drive about 10 miles to find a phone so I could call her.  Now, most years, when midnight strikes, I’m just home.  Stuart often doesn’t even make it to mid-night.  He doesn’t like to be on the road on New Year’s Eve because of all the drunks.  I understand, but it’s hard on me.  He promised last year, this year we would do something special.  We were going to check into a hotel, party in their and we wouldn’t have to drive anywhere that night.  Perfect.  But, as you can probably guess, we can’t do that.  Plus, I’d probably be miserable because of my hearing troubles.  So what to do?

I don’t like it when I get like this.  (I logically know part of it is PMS, and I will pull myself out of it, but it’s a rough time.)

I’m certain I can deal with whatever the future has in store for me, but right now, I hope it doesn’t throw me another curve ball too soon.   I need to catch my breath, and renew my outlook.

Now for the request.

As I’ve mentioned on here, I started a goal list for the Day Zero Project.  You list 101 things to do in 1001 days.  I have one thing on my list that should be easy, but it hasn’t been, and I was hoping you guys could help.

#26 on my list is to Make a list of 20 things that I like about myself and stick it to my mirror.  (to be read every day)

I’d like to change that to Make a list of 20 things others like about me and stick it to my mirror.

Can you help?  Can you tell me something you like about me?  Not only will it help me check something off my list, I think it would help me during this dark time to hear some good things about me.

thank you all.

The Versatile Blogger Award

On By WendyIn Chronic Illness7 Comments

My friend, Maureen (otherwise known as Mo) from Day by Day with the Addison Girl, awarded me the Versatile Blogger Award!

As recipient of The Versatile Blogger Award, you must tell 7 things about yourself that your readers might not know.  Then pass the award along to 5 other deserving bloggers.

Whew….both of these things are tough.  The first part because, I’m kind of an open book.  There isn’t much I haven’t told on this blog at some point.  But I’ll try to think of something, hope I can keep your interest.

The second part is very tough, because I read some amazing blogs, to narrow it down to just 5…that’s tough.  Some have been narrowed down for me because I see they’ve won the award before, so to be fair I won’t pass it along to them.  But still, I read some amazing blogs, this is just a sample.

Seven Things You May Not Know About Me.

1. I sleep with a stuffed Monkey.  His name is Monkey Monkey Monkey…no really it is, I have his birth certificate and everything.

Monkey Monkey Monkey!

2.  I wear a size 4 in Boys Converse All Stars.  My favorite kind of shoes!  My hubby says I have baby feet.  I say that’s the real reason I can’t balance very well, my feet are too small to keep me steady.

I wore shoes just like these at my wedding reception. (I was barefoot during the ceremony) The entire wedding party wore Converse!

3. I have been known to snort and pee my pants when I can’t stop laughing.  Well, sometimes I’ll just snort when I laugh and it makes me laugh harder and harder, often while saying….”did you hear me snort?”   So glad I can laugh at myself now.  When I was a kid that horrified me.  (it’s still quite embarrassing to pee your pants though).

4. I didn’t fly in a commercial plane until I was in my 30’s.  I did fly in a little two-seater once before that, but for just a quick jaunt, I also went up in a helicopter before flying in a commercial plane!  (my father worked for the SC State Forestry, you know Smokey Bear, and he got me these rides in the plane and helicopter that they used for fighting fires.)

5.  As a rule, I hate to drive with other people in the car.  However, there are a few people who scare really scare me to ride with, so I always drive when we go places.

6.   I’m a huge Vincent Price Fan, and own an original Dr. Phibes Action Figure.  (The Abominable Dr. Phibes was Vincent Price’s 100th movie.)

7.  As you may know, I have a degree in art.  What you probably didn’t know, is that I was originally a math major.

So, how many of those things did you know about me?  It’s not fair if you know me in person!

I will now pass this award on to 5 bloggers…..and here they are, in no particular order….

  • Sunshine and Chaos – Maureen (a different Maureen than the one who awarded this to me) sums up her blog as:  “Things that amuse and bemuse me as I wander the wilderness that is invisible chronic illness.”   I love her description, and don’t think I could add a thing.
  • Fly with Hope – Kelly shows tremendous courage in her blog.  She doesn’t hide, she opens her heart and shows people what it’s like to live how she has to live.  Kelly has a deep relationship with God, that helps her deal with many chronic illnesses.  She describes her blog as “The thoughts of a woman who loves Jesus and is navigating her way through chronic illness.”   Be prepared when you read Kelly’s blog to see the dark side of her illnesses and feel the light she keeps shining to get through each day.
  • Creativity to the Max – Judith/Judy is an extremely talented and giving woman who lives with chronic illness and helps others.  Her posts can be very funny, poignant, sad, instructive, loving….  Even when her post have a touch of sadness, you can feel her sense of humor.  She makes me laugh nearly every day, either by one of her post, or from comment’s she has left on mine.  (of course, I should mention, that she’s really just Max’s human, and he is the real brains behind this blog.)
  • SoulComfort’s Corner – Rita is a creative, high spirited woman who is housebound due to health issues.  She “talk(s) about any art or craft project (she’s) currently involved in, the weather, movies, books, health, spirit, life, and (her) cat Karma.”  Her blog is comfortable, once you start reading it you feel you have found a friend…and you have.
  • A Day In The Life With Meniere’s – As the title says, Angelea, tells about her life with Meniere’s.  She also talks about life in general.  Angelea has a positive outlook, Is a great support and reminds us to live in the moment.

 

If you would like to pass your award along and participate in the Versatile Blogger Award, just tell us about yourself and let us know about five of your favorite blogs.  If not, that’s OK too.