Tag: migraines

So, What am I mad about now?

On By WendyIn Chronic Illness, Life, Meniere's Disease, stress7 Comments
I Don't Like Me When I'm Angry!

I mentioned in my last post that I’m dealing with some anger issues.
I’m not talking about getting a bit upset here and there, I’m talking about some deep seeded resentment.  Something down in my gut that is just eating away at me.  Perhaps that is a bit strong…but I wanted to make a point.

I’ve been snippy, grouchy, teary, snappy….  Oh, let’s just say it, I’ve been a bitch lately.

Not all the time, at times, I’m a perfectly likable me.  Positive, light hearted, smiling, laughing…  Then unexpectedly, something will hit me in just the wrong way, something that normally wouldn’t mean anything, and I want to explode.

Finally, I tried to take a step back from the situation.  And ask myself, what are you REALLY mad at.  I’ve come up with a few things, some I bet you have felt at times, others may just be me.  I don’t like being like this.  I try very hard to keep a positive attitude, to believe things will work out, to understand that even if they don’t, I will survive.  No, not just survive, I will thrive!

It has been hard lately.  Spending almost every minute lying down.  Having horrific headaches, hearing things that aren’t there….well you all know what I’ve been going through.

And that my friends is what, I believe, I’m mad about!

I don’t want to sound petty, or ungrateful, or as if I don’t have hope.  This is just anger.  It may not be totally justified, and it’s not fair that I keep snapping at my husband, but it’s there, and I felt like I should discuss it.  (perhaps giving it a voice will help it to go away.)

I’m MAD…

  • that I’m not cured.  I know I kept saying that I understood that this was not a “cure”, that I know I still have Meniere’s Disease, and that I could handle it if my symptoms returned.  That this procedure gave me hope, and I would cherish every moment I had as a “normal” person.  (I’m not saying that those feelings have changed.  I still feel that way….but I’m still angry that it’s happening…and I don’t like myself very much for saying that.)
  • that I thought this was over.  I don’t feel that I was being as realistic as I should have been.  I’m not sure I was being honest with myself.  I knew the possibilities it could happen again, and I would need more treatment…but I don’t think it really sank in.  I put those thoughts aside and thought about the future…for the first time in a long time.
  • that I don’t feel I can plan for the future any more.
  • that I’m scared.
  • that I can’t do things I need and want to do.
  • that my house needs to be cleaned.
  • that Stuart has to do everything, and I keep getting angry with him when things aren’t done.  Or done the way I would do it.  How can I get angry at him for this?  Or am I really just angry because I can’t do it?
  • at my friends, who haven’t gotten in touch, who haven’t offered to help…the most I get from most is a quick note on facebook.  I know this has been going on for a long time, I know that my friends have lives and responsibilities.  I don’t blame them.  But I’m still hurt, and angry.  I don’t want them to feel bad.  I don’t know what I want, or expect.  I have 2 local friends who really keep in touch with me.  1 emails me often, 1 often chats with me on line.  (and I know he would be over to see me more often if he wasn’t having troubles of his own right now.)
  • at my family.  Who have never offered to help in any way.  (I must put in here, that I didn’t expect it.)
  • when I read about others who have so much more help.  Who have friends who bring them dinner, or family to come stay with them for a while, or someone to just sit with them.  (again, don’t get me wrong, I am so very grateful for what I do have…especially my husband)  But I am hurt, and disappointed that I don’t have more people who reach out.  And I’m mad at myself for being jealous of those who do.

Oh, I’m certain I could go on and on, but I’m sure you understand by now.

This anger isn’t deserved.  It’s not even real in some instances.  I think it’s mostly about the situation.  I don’t want to be in this situation, and it makes me mad.  I don’t want my husband to be in this situation, and it makes me mad.  I don’t want to have my life on hold, and it makes me mad.

I’m trying to write this objectively, and honestly…but I’m not sure those two things go together right now.

When I got so much better after my patches in January, I started to see my friends at gatherings and things.  At first it was very hard.  I was angry at them.  It’s hard to explain.  These people mean a lot to me, but I felt like they forgot me when I wasn’t able to do much. Most didn’t ask Stuart if he needed anything.  Even when I would reach out and say exactly what I needed, I usually didn’t get it.  (I’m not talking about big things here, I wanted contact, emails…anything)  As I said before, I understand that people are busy, they have lives, and it’s hard to deal with a friend who has been having health problems for a long time, it’s not like it’s something that just goes away after a visit to the hospital, or one time bringing a caserole…this illness lasts…well, a life time.  Finally, I was beginning to feel better about things.  We would go to parties and I felt that I could mingle, and talk with people, and not feel that under current of anger.  I don’t want to feel like that again.

I am overwhelmed by everything that is happening to me.  In just the past 2 years my hearing has gone from some hearing loss in my right ear, to severe hearing loss in both ears.  I just got hearing aids in March, and I can barely hear out of them now.  When I don’t have my hearing aids in I can barely hear myself talk.  I realized I was screaming at Stuart the other night because my throat started to hurt.
But at times, for short periods of time, I can hear better.  So I don’t know what to do about the hearing aids if my hearing is fluctuating so much again.  (I’ll see Dr. Kaylie next month, I’ll ask him then.)  Of course, I’m hoping that after seeing Dr. Gray I will have some answers and my hearing will improve again.

This hearing thing makes me so mad!  Partially because of losing my hearing…but not really…I think I’m handling that pretty well.  But because having my hearing drop has always been a sign of a Meniere’s Vertigo Attack coming on.  So now, I’m constantly on alert.  I’m so jumpy, and jittery.  Every time I move my head and get a bit off balance, I’m convinced I’ll be spinning soon.  Or, I start to get used to it, and start to ignore it, like I did the other day…and I was almost hit with a full blown attack.  (yesterday, was more of the same.  Lot’s of mini-spins.)

I am trying very hard to deal with this anger.
Dang-it!  I’ve had some crappy stuff happen lately, and I’m pissed!

I’m also trying to come to terms with it.  To feel some of it and not bury it.  Just writing this helps.  Now I hope I can deal with it, and move beyond.

But, I’m also very grateful that if this was going to happen, it did it now.  Before we brought a child in to our lives.  I’m grateful, that I have good doctors who really care, and will do all they can to help me.  (I just wish I could have gotten in to see them faster. – and yeah, I’m pissed about that too!)  I’m more than grateful for my loving husband, and all that he does.  I just wish I could help him more, or get him some help.

I also want you to know…ALL OF YOU…how very much you mean to me.  How much your encouragement, and caring words have helped me through many a rotten day.
**I saw a post on Fly With Hope today, and I thought, “Yes!, that’s what I wanted to say!”  http://flywithhope.blogspot.com/2011/08/less-bitter-more-thankful.html  Thank’s Kelly, I needed to hear this.  I’m feeling more thankful already.  I promise I will not let this anger fester and become unrelenting  bitterness.

An Evil Goblin Lives in my Head.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

I’m finding the drawing journal to be very therapeutic.

Day before yesterday was a very, very bad day.  I was awakened by one of the worst headaches I’ve ever had.  The lower part of the right side of my skull, and down my neck was…well, I can’t think of a good adjective…let’s just say, I was in a huge amount of pain.

Throughout the day I kept trying different meds to see if anything would work.  They sometimes made it better, often not.  I was nauseous, and just miserable.  That afternoon, I turned to look at Stuart and the world moved.  I felt all the symptoms of an attack starting.  The world was off-balance, but not completely spinning yet, I got HOT, I didn’t feel like my head and my body were listening to each other….I told Stuart…”It’s coming!”  He ran and got my medication, some cool wash clothes, and trash cans….he was getting prepared.  I’m happy to say the whole world spinning part didn’t happen, I didn’t throw up…but I was amazed when it started to calm down and didn’t become a full-fledged vertigo attack.  (I have a question, anyone else out there who has these attacks, when it first starts to you really have to go to the bathroom…bad?  Every time it starts, I have to go!  I don’t want to get up and move to go to the bathroom, I just want to stay as still as possible…but I can’t I have to go!)

For the rest of the day, the tinnitus was very loud, my head hurt, and I was exhausted.  I had to use my walker.  (very strange thing I’ve noticed, a lot of time when the tinnitus is at it’s worst, I can hear better….isn’t that the strangest thing you’ve ever heard?)

I’ve decided that I have an Evil Goblin living in my Head!  And he looks something like this:

Doesn't he look Evil?

These are his torture devices:

Look Familiar?

Here’s another sketch of my Evil Goblin (the original looks better.  I didn’t realize photographing graphite was so hard.)

face of the Evil Goblin in my head.

I hope you have enjoyed a view in my head.

Wanted to let everyone know that my appointment with Dr. Gray has been moved up to the 22nd.  I’m still on the cancellation list and if anything comes up before then…keep your fingers crossed.

Living for the day.  One day at a time.

So much to say….

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain13 Comments

I keep thinking of posting, I have composed many wonderful posts in my head as I lie in bed waiting for sleep will come….but of course, I can’t remember any of it once I wake up.

I don’t know what’s wrong with the spacing on this post.  I’m sorry it doesn’t have breaks for a lot of it.  I put them in, but they didn’t show up.  

**Fair warning**  This post is a lot of stream of consciousness talking.  Things that are on my mind.  You are welcome to read part of it, or non of it, or all of it….what ever strikes your fancy.  Just beware…I may ramble a bit.

My symptoms lately have been very strange.  Perplexing, is a good word.

photo courtesy of scienceblogs.com (Migraines)

I’m very lucky, I am NOT having vertigo!  But here’s what’s going on:

  • daily migraines – on a scale from 3 – 9  (one day was a 10 for about 10 – 15 mins, Stuart was ready to take me to the ER…but it subsided)
  • tinnitus going crazy – at times my tinnitus is so loud I swear a jet engine is taking off in my skull.  Usually, it last a couple of hours, slowly returning to my normal hum.  But days like yesterday….well, the EXTREMELY LOUD ROARING lasted for about 8 hours!  For a few days every night it would start around 10:30 pm and last until about 3 or 4am…then I could finally sleep.
  • my hearing was better during the loud tinnitus – yeah, WTF?  I put in my hearing aids and I could hear all the dings that sound when you first put them on – in BOTH ears.  This only lasted a few hours. This is the second time this has happened.  I’m glad because it shows me my hearing can improve in that ear, but it’s a bit much when it happens in conjunction with the roaring.  It’s also very confusing.
  • fatigue – are you surprised by this one?
  • disequilibrium – No I’m not having vertigo, but I get so off-balance some times.  I’m also getting that “woosh” feeling when I move my head too fast.
  • I keep feeling like I’m on the verge of an attack, but it doesn’t come.
Dr. Gray sent me an email that said she wanted to “test my pressure now!”  But her scheduling secretary said the soonest I can get in is August 30th.  He emailed me this, I emailed back and asked to be put on the cancellation list, telling him I only live a few minutes from Duke so it wouldn’t be a problem to get there in a hurry.  He didn’t respond, just set up the August 30th, appointment.
I’m not sure Dr. Gray is aware of how long it’s going to be before I can get in there, I think I’ll drop her a line today.  I hate to bother her, I know she’s a very busy lady…but I’m suffering here, and she did say she wanted to get this done “now!”.
Accomplishments:  Despite my symptoms, I have been able to do a few things. (Yes, mostly stay flat on my back, because it seems the symptoms are less the more I stay horizontal.)
On Friday, I had a massage.  Bliss.  I was having a very bad day with the disequilibrium that day, but made it through.  My massage therapist is a wonder, and very understanding about my conditions.
On Sunday, I went to the grocery story with Stuart, a whole hour and a half out of the house!  I felt like crap, but it was nice to get out!
On Tuesday, I went to a Home Owners Association meeting.  That didn’t go very well.  I was glad I could go, but had to rush home afterward.  The tinnitus got so loud while I was there I couldn’t tell the people were actually talking.  (I could see their mouths opening, but could not hear the words.  All I could hear was the rumbling.)  Still glad I went.
On Wednesday, it was a very LOUD day, as I mentioned before.  So most of the day was spent on the couch or in bed.  But last night right before I went to bed, I felt better.  So I cut up a bunch of tomatoes from our garden, and some shallots, also from our garden, with some garlic and had them in the crock pot (the pot part of it) in the refrigerator ready to turn on today to make spaghetti sauce.  I’m using fresh herbs out of my garden, so I’m not adding those until it’s almost finished.  (unfortunately, neither Stuart nor I got up at a reasonable time today, so we’ll be having spaghetti tomorrow.)  Haven’t tried to have spaghetti since my Dietary Fructose Intolerance diagnosis, hope it goes well, I really miss it.
Today.  Again, I’m mainly flat on my back, but I’m also doing laundry.  So a bit of getting up and down, but it feels good to do it.
The Artist’s Way workshop…well, that isn’t going so well now.  The farther I get into this book, the more I don’t agree with some of the things she suggest.  Last week was supposed to be reading deprivation.  That’s right.  No reading for a whole week.  Also no TV, or anything like that.  Ummm, no reading?  Well, that just isn’t going to happen with me.  I love to read, and get a lot of inspiration from it.  I just don’t get that one.
This book says you don’t need to be religious to follow the workshop.  But it continually talks about God, and how your creativity comes from Him, and by opening yourself up to his gift you will find your inner muse.  I don’t want to get into a talk about religion here.  But, I’m not that religious.  I’m not an atheist, but I’m not someone who believes I should turn everything over to God and it will work out.  I think he would expect me to do things for myself.  To work hard….  I could probably get in a whole big theological discussion here.  But I’m not trying to.  I can see where some people will be able to get a lot from this book.  But I just don’t think it’s for me.  I do enjoy the “morning pages”, and the Artist’s Dates.  I will try to keep those up.  I haven’t completely dropped the workshop…but I’m not as enthusiastic about it as I was when I started.
photo from weblo.com (I just thought this picture was really cool!)

I wish I knew of a different Creativity Workshop that wasn’t centered around God.  I’ve searched and found some possibilities, but I don’t want to dish out the money on books that I don’t know enough about.  I did find a couple at the library that I have ordered.  We’ll see how that goes.

I guess I will have to change my that goal on my 101 things to do in 1001 days.  Perhaps, instead of saying, complete the Artist’s Way Workshop, I will simply say, to complete a creativity workshop?
I think I’ll easily pass my goal of reading 100 books this year.  (I made that goal on Jan. 1st).  I’ve read about 15 in the past month.  Funny, how much you can read when you can’t do much else.  I’m proud to say that I haven’t just been reading popular fiction.  I’ve been reading art books, self-help books, classics and I’ve even been reading a book about the history of the Free Masons.  (that’s a really strange read)  I’m slowly reading Uncle Tom’s Cabin, but it is quite a good book!  I like to jump around from book to book, what I’m in the mood for at that moment.
Things that are on hold:
Of course having these symptoms have put a lot of things on hold.  It makes me sad, but I’m hopeful I will be able to continue these in the near future.  Including:
Becoming Foster Parents
Losing Weight
Exercising
Taking an ASL (American Sign Language) class.  I planned to take an ASL class through a continuing education course at our local technical college, but it starts August 16th.  If I can’t even get in to have my pressure checked before August 30th, I don’t think it’d be a good idea to start trying to take a class.  I’m checking some things out at the library…we’ll see what I can learn on my own.
Gardening – The garden has been severely neglected.  It’s time to start thinking about a fall crop, but that isn’t happening.  Our summer crops didn’t do very well.  As I think I’ve said before, we’re learning, and this year we have learned a lot about what NOT to do.
Some art projects I have started, and some I have planned.
Some things I want to do to the house.  I’m amazed at how fast our house can get out of order once I’m disabled.  This house is just too big for us.  Especially when Stuart has to do everything alone.  (more on this later.)
Almost everything except staying flat on my back….ugh!
Coming soon: Some of those wonderful posts I’ve been thinking up….Anger – what are you really mad at?…..Finding my Happy Place….

Artist’s Date Week 3 – let’s play with Photoshop!

On By WendyIn Chronic Illness, CSF, Disability, Meniere's Disease, PainLeave a comment

I’m not sure how much The Artist’s Way workshop is helping my creativity.  I find that most of the time in my “morning pages”, I write about being chronically ill.  Perhaps that is what is causing my creative block, what is standing in my way?

However, I do like the fact that I have to take at least 1 hour each week as an artist’s date.  I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that.  I’ve had to improvise, and that’s a good thing.  It’s teaching me that I can create, something, even when I’m flat on my back.

One of my 101 things to do in 1001 days, is to learn Photoshop.  So today, I created something using Photoshop on my artist’s date.

 

 

The flowers in this are photos I took of flowers in my garden.  Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text.  I’m learning!  And I had fun!I’m feeling much better about things.  Don’t know why…just kicked myself in the butt, and said enough!

Still having the disabling headaches, and I had no idea that tinnitus could be this loud!!  I think I will go insane if I have to hear this all the time.   Oh, wait!  What’s that you say?  Too late.  Yeah, I know.   Did I mention that the sounds in my head are not voices?  Well, not lately anyway.  Ha!

Yes, I’m in a strange mood.  You have industrial machinery running inside your head for days and see if you don’t get a bit punchy!  Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the???  (I’m trying to stop swearing.  Probably not the right time for that, but I’m giving it the old college try.)  What does that mean anyway?  “The old college try”?  Hum.

Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache.  Sounds like I still have low pressure.  ??? Maybe???  Oh, who the….oh wait, I’m not swearing….um….who in the world knows?  (better?)

happy thoughts!

 

Being a better Advocate – updated

On By WendyIn Advocate, Health, Meniere's Disease4 Comments
little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.

Way Too Much Stress!

On By WendyIn Chronic Illness, Meniere's Disease, stress3 Comments

Another venting post.  If you are tired of hearing me bitch, please just ignore this post and come back next time.  : )

I think I’m dealing with things pretty well…considering.  Stuart says that I just brush things off, that I’m not realizing how much has been coming down on me.  Perhaps that’s why I haven’t been feeling well?  I don’t really feel stressed…but I think it’s coming out in other ways.  Deep Breath!!

As you all know I went through a scare with Stuart recently.  I must admit this has gotten to me more than I want to acknowledge.  I realized this yesterday when we were lying in bed, laughing about something, and I grabbed him and looked him in the eye and said, “DON’T YOU EVER SCARE ME LIKE YOU DID!” And yes, I was shaking him a little bit as I said it.  What the????  And I keep dreaming about it.  We will be together in my dream and I will look over and see him as he was when he walked in the door on that fateful day.  Not a good dream.

Now I have something else on my mind.  One of my best friends is going through marital troubles.  She has twin girls who just turned 3.  Her marriage has been strained for the past couple of years.  Night before last he was arrested for physical abuse.  I’m so worried about her.  I’m happy that she is on her way to her mother’s, and will be away from the situation for a while.  But I’m concerned.  And I’m afraid she won’t talk with me about it.  I knew things weren’t right between then, but she hasn’t talked to me about it really.  She didn’t want to “bother” me with everything because of what I’ve been going through.  That really bothered me.  It really bothers me that my friends don’t think I could still be a friend because of my health problems.  Am I not still the same person?  Am I not still the person she has confided in for years?  Or is she just using that as an excuse because she knows I never really liked her husband.  Or because she was embarrassed?

But she isn’t the first friend who has told me that they didn’t want to “bother” or “burden” me with their problems because of everything I’ve been going through.  That hurts, and I just don’t get it.  For one thing, I’ve been a lot better since January.  And even when I was more ill, it would have helped me so much if my friends still made me feel needed.  I had to start this blog to start feeling needed again.

I shouldn’t say I don’t get it.  I do.  But people just don’t understand.  I don’t need to be left alone to wallow in my illness.  I need to feel needed!  I need my friends.  Instead I’m often avoided.  Even now that I’m feeling better.  I feel like some of my friendships have not survived.  We are more like acquaintances now.

I’m still not feeling “normal”.  I have “slosh head”.  My hearing has been down for a month now.  So I’ve been on constant alert that I may be having an attack at any moment for weeks…heck, this is beginning to feel like my normal.  I am so tired so much of the time.  What is wrong with me?  I’m sleeping 10 – 12 hours a night, and often take a 2-4 hour nap during the day.  So some days I’m only awake for about 8 hours.  Oh, and the headaches.  I’ve been having more and more headaches.

OK, perhaps the stress is getting to me.

Much better.

On By WendyIn Chronic Illness, Disability, Life5 Comments

I wrote this post yesterday but for some reason I didn’t post it.  I still want to let everyone know what was going on, but I also want to say that the tinnitus has calmed down to a tolerable level, and my hearing is almost back to normal.  I’m feeling much better!!

But this was yesterday:

As we all know, I’ve been under a LOT of stress lately.  I’m really trying to take care of myself, but I still feel pretty crummy.

Last Thursday, I woke up and the hearing in my left ear had significantly dropped.  Now, it’s been over a week, and still my hearing is down.  I can’t remember a time this has ever happened before.  Normally, if my hearing drops I have an attack shortly afterward.  My last attack came after 4 days of diminished hearing, and that was unusual.

After the scare with my hubby, I have been so very tired.  I’ve been sleeping A LOT, and mainly just lying around.  I keep feeling off-balance, but not spinning.

Last night the tinnitus significantly increased.  And I really mean Significantly!  My left ear is roaring so loud I can hardly concentrate on anything else.  Sleep is almost impossible.  (I did doze on and off all night.)  It’s just so dang LOUD!  My head hurts.

I just want to scream, “What the F*%&?”

I’ve been feeling like I’m on the verge of an attack for over a week.  Hearing dropped, fullness increased, tinnitus increased, and disequilibrium is icky.  Being on constant alert is so tiring, and painful.  Yes, I said painful.  I am in knots, all over my body.  I am so tense I just can’t relax.  Every night before I go to sleep I have to take a hot bath to try to help the pain.

On top of that, I can’t stop thinking about how close I came to losing my husband.  I just don’t know what I would do.  He is just so much of my life.  My best friend, my lover, my care-giver, my provider….  Not only would I be losing the love of my life, I’d be losing my stability.  I feel horrible for thinking about those things.  It has been so hard for me to give up so much of my independence, and I finally came to terms that I can rely on him, and accept his help…but what if, in the blink of an eye, it was all taken away?  Yes, we have life insurance.  I would be provided for monetarily for some time, but money can’t give me what Stuart does.  He accepts me, he loves me, he is always there when I need him, and I need him a lot.

I’m working on it.  But that was a big scare, and it will take some time to deal with it properly.  I just hope it did some good.  I hope Stuart can find more in life to make him happy.  He has a career he’s not that happy in, but we need the money.  I would really like for us to be able to get in the position where he could afford to make much less money, and where I could contribute.  Having a job you love is much more important than having money.  Unfortunately, with the medical bills, and a mortgage, money is pretty important right now.  We thought about down sizing, and simplifying our lives, but selling the house in this market…not really possible.  But I want to have a plan.  A plan to change things.  I want for Stuart to find hobbies or volunteer work that he can find happiness in while he still has to work in a career he really doesn’t like.  We can do this.  I can help.

thanks for listening.  I feel much better today.  : )

What a nice day!

On By WendyIn Life, Meniere's Disease5 Comments

I had such a nice day today, I just had to share it.

My hearing is better.  No symptoms at all really!  Yay!

Today we went to the co-op first and stocked up on groceries for the week.  We came home and made burgers.  We cooked them on the grill, and then we ate outside.  It was about 80F!  So cool.

Then we went to look at cars.  For ME!  Yes, we are looking at buying me a car.  For years we’ve been a one car family, but one of the biggest reasons I don’t drive is because I’m afraid that I will get out and have an attack and won’t be able to get home.  I would just feel so much better I knew I could call Stuart to come get me if something happens and I feel like I can’t drive.

This is the car I test drove today:

2004 Volkswagen Beetle

How cool is that?  We drove it with the top off, and it was so much fun!

Not sure we’ll get this car, but it sure was fun test driving it.

Another nice thing about today…my husband has been flirting with me all day.  It’s so nice.  He so often has to be my caregiver, it’s so very nice for us a day where we are just a married couple, in love, and having fun together.

I’ve been feeling great lately.  I still have my lumbar puncture scheduled for Wednesday, I think I’ll try to do as much as I can from now until then.  That way if over doing it is what caused my last set back, it should do it again.

Tomorrow, I have another one of those Breath Tests.  On Friday when I could finally eat I had such a horrible headache I was forced to bed for hours.  I hope tomorrow’s experience is better.

Today was such a nice day.

Here we go again.

On By WendyIn Meniere's Disease1 Comment

Still can’t hear.  It’s so much worse now that the Meniere’s is in both of my ears.  Since I can’t ever hear out of my right ear when my left ear is having problems I am at a major disadvantage.  I’m trying very hard not go get frustrated, but I get so tired of saying, “What?” and “I’m sorry, but I can’t hear you.”  I have to admit I often let my frustrations out on my husband, he will talk to me and I just yell at him that I can’t hear him.  It’s not his fault, just two days ago I could hear him.  I just get so frustrated.  I’m trying to get better.

We went to the mall today to pick up some dog food from a non-profit store that we like to give business.  This mall is a good ways away from our house, but I think it’s worth.  Normally.  When we got there we decided to walk around for a while and get something to drink, do some window shopping.  I have a huge weakness for shoes and just had to look.  We are trying not to buy anything new right now, so I was just looking, however I was being mighty tempted.  I tried on a pair of shoes, really I wasn’t going to buy them, usually when I try on a pair I change my mind….and I did.  However, when I went to put the shoes back I had one of those “Oh shit, the world just moved much more than I did.” moments.  I immediately took some Valium and Phenergan and decided it was time to leave.  I did start to feel better on the way home but was in no way stable.

After we got home I hit the couch, and I’m still here.  I went to the bathroom and things went a little merry go roundish again.  So, I took some more meds and just had a Phenergan suppository too.  I’ve also had a horrible headache today.  I took a Maxalt (a migraine abortive) a little while ago, it eased it but didn’t take it away.  I’m afraid to take a pain pill, I’m afraid I’ll get dizzy since I’ve already taken 2 Valium.

I thought about taking the Diamox, the medication Dr. Gray gave me if my pressure went too high, but last time I took that it made things worse and I had horrible side effects from it.  I don’t want that to happen again.

Thank you all for the encouragement.  I do want to let you all know, I’m really not that stressed about this.  I’m not afraid of an attack coming on.  If it does it does.  I am afraid I’ve gone through all of this for nothing.  I am afraid I will have to suffer through the attacks and feeling awful for months before they will do anything else.  I wonder sometimes if I shouldn’t have just gone ahead and gotten the surgery on my left ear like I did my right.  At least it helped the vertigo.  But then I think.  How else would they learn if not for people like me, taking the chance to risk a different type of treatment?  It may not work for me, but it has worked for others.  And who knows it is still too early to tell, it may work for me too, it may just take a bit more tweaking.

On top of this I think my kidney stone my be moving.  My left side is hurting, just where the doctor told me it would, and I keep feeling like I’m going to explode if I don’t pee, but when I go in there I just get a few drops.  Hopefully, it will just settle back down and won’t decide to come out right now.  I really don’t need to deal with that right now.

Well, I’m really tired now and think I will rest some more.  Perhaps even just go to sleep.

I mainly just wanted to vent a little, and let everyone know I’m OK.   Thank you all for all the well wishes.

(My thinking is a little muddled right now, so I apologize if this post isn’t up to par.  Please forgive grammatical and spelling errors, or rambling.

The First Signs of Spring

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

I went to the library today and there were daffodils blooming in front of the building.  Oh, I love the first signs of spring.  On Monday it was so nice I sat outside for a while and just soaked up the sun.  It was so beautiful.  I know we will still have some cold days, but the warm days are peaking through, and that is making me happy.  Time to start planning our garden!

I’m sorry I haven’t posted in so long.  My stupid headache lasted for days.  I literally slept for nearly 2 straight days trying to get rid of it.  I’d wake up and would still be in so much pain, I’d just take more meds and go back to sleep.  It has been much better, but I still feel like I have a nagging headache, just not one that will knock me on my butt!

On Monday, I had a good day.  I actually cleaned the kitchen, and vacuumed the kitchen/breakfast nook and living room.  It looks so much better.  Our new vacuum is so powerful, it needs a different attachment on it for the carpet, it is so powerful the suction makes it hard to get it to move along the carpet.  But, boy you really should have seen how much dirt it picked up.  I never would have guessed there was that much in there.  (Or maybe you shouldn’t see it…now should I be ashamed?  Or delighted that I was actually able to finally get it up?  I think I’ll be delighted!)  And today I’m working on the laundry.  I really hate doing laundry, but I’m so happy I am just able to do it.

I even made candy on Monday!  I was going to take a picture, but I put it in the refrigerator, and it turned a funny color, so I didn’t think it was photo worthy.  However, my husband was thrilled.  I made mint chocolate Lego Blocks for him…he is a huge Lego fan, and loves mint chocolate…no silly hearts for him on Valentine’s Day.  : )

We even made it out to dinner.  I had planned to cook, but we hadn’t made it to the grocery store, so out to dinner it was.  We got there early, so no waiting.  Then we spent the evening grocery shopping.  How romantic, right?  We did come home and have a nice quiet evening together and it was very nice.

So, how am I doing physically?

Better.  But the headaches aren’t good.  However, I think they are mostly hormonal.  I’ve been having a very light period, but it’s the first one I’ve had in months.  Also, I’m trying to go off of birth control pills.  (no I’m not trying to get pregnant, I just want my hormones to be my hormones and see where I’m at with all of that.)

I still start feeling worse in the evenings.  Dr. Gray is talking about testing my pressure to see where I’m at, I think that’s probably a good idea.

I did see my regular MD this past week.  (did I mention that before?  I should probably re-read my last post, I was in so much pain when I wrote it I really don’t remember much about it.)  Well, if I haven’t mentioned it we found out that I have a B-12 deficiency again.  I was getting shots last year, then I went to oral supplements.  It looks like I don’t absorb the oral supplements or B-12 in my diet very well.   A lot of people with celiac disease don’t.  So some of my icky feeling symptoms could very easily be caused by that.  My thyroid was also a bit low, so there we go with more of the same symptoms.  Fatigue, dizziness, GI symptoms…  It’s hard to know what is causing what.

My nutritionist started me on a diet to help regulate my blood sugar.  It is mainly just meat and veggies with very little fruit.  I am to make sure I have protein and fat every 2-3 hours.  I’m also to drink lots of broth.  I’ve been drinking the broth for a few weeks now, and it really seems to be helping my digestion.  I’ve actually had come normal bathroom habits.  I still have some diarrhea, but it is less that it was, anything that isn’t diarrhea is less that it was.  (I know icky subject.)  If I could just start losing some of this weight I would be a very happy girl.

The last couple of nights I’ve had a hard time sleeping.  I’ve read 3 books this week.  One was pretty short, but still, that is just insane considering I don’t read in the day time.  You can really tell when I have insomnia, I go through books like crazy!  I read Counterfeit Magic by Kelly Armstong, Three Bedrooms, One Corpse by Charlaine Harris and Ghost Town by Rachel Caine.  All of these books are parts of series.  Sometimes it drives me crazy that I get all caught up in a series, other times I can’t wait for the next one to come out.  I was disappointed in the first book.  The second book is a mystery, this poor girl one of those people who always seem to have people murdered around her, but it was cute.  The last book, was really good.  I was impressed that this author was able to come up with such a unique story on book 9 of this series, I felt like it was getting a bit same old same old with the last book, but this one really switched it up.

Well, that’s all for today.  I hope you are all getting your first days of spring and are enjoying them as much as I am!