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.

I FORGOT!

On By WendyIn Uncategorized4 Comments
A photo of my mother in her 50's probably. Looking to her right, was cropped from a photo with other people.
My Mom. Not the best picture, but it's the only one I have on my computer.

How, how could I forget?  3 days ago was the anniversary of my mother’s death.  It has been 18 years.  I miss her every day.

So tell me.

HOW COULD I FORGET?

Christeen M. Calloway, Jan. 1, 1929 - June 23, 1993 photo from findagrave.com

I know I have had a lot going on lately, but I still feel just so distraught about this.

Normally, I make a point of celebrating my mother’s life on the anniversary of her death.  Yes, I do that many days, but on that day it’s special.  I talk about memories, we eat her favorite foods….

How, oh how could I have forgotten?

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.

I think my name should be Ickis!

On By WendyIn Uncategorized8 Comments

I’ve decided my name should be Ickis.  (Not to be confused with this the Nickelodeon star, from Aaahh! Real Monsters.)

Ickis! Photo courtesy of Nickelodeon' Aaahh! Real Monsters!.

I wrote on June 10th that things were much better, that the tinnitus had reduced and my hearing had returned.  I’m happy to say that the tinnitus is still tolerable, but the hearing in my left ear was up for one day.  On June 11th it dropped drastically again, and it hasn’t improved.  I feel icky!

I don’t know what is going on, but I’m so tired.  Believe me, when I say I’m tired, I don’t just mean that I’m tired of what is going on, I mean I am exhausted.  I have to force myself not to sleep.  All I want to do is sleep.  It’s a bit disconcerting.

For those of you with Meniere’s, you know that icky way you feel after an attack?  How exhausted you are?  Feeling off-balance, and well, just icky?  That’s how I’ve been feeling for a couple of weeks now.

But I’m also having some of the symptoms I have right before I have an attack.  The hearing drop, the increased tinnitus (although not as bad as it was), the full feeling in my ears, and feeling off-balance.  Ick!  I feel like I’m on constant alert, ready for an attack, afraid to do anything for fear of spinning.  I don’t want to go far from home, and I sure don’t want to drive.  But it’s been going on for so long now.  Am I just going to feel like this and nothing happen?  Or what?

Now today, I’m having diarrhea again.  Not to be too graphic or anything…but my butt hurts!

Ick!

I think I’ll take a nap.

The Challenges of Summer.

On By WendyIn Disability, Fructose Malabsorption, Gluten-Free, Meniere's Disease4 Comments
Phineas and Ferb courtesy of The Disney Channel

As Phineas and Ferb say:

There’s 104 days of summer vacation
And school comes along just to end it
So the annual problem for our generation
Is finding a good way to spend it…

Yes, it has been a long time since I’ve been in school and had a “summer vacation”, but I have always loved summer.  For as long as I can remember I’ve always felt better in the summer.  I hurt less, and I just want to get out and do more.  Longer Days and Warmer Nights…life is good.

The challenges of Summer?

  1. I over do it because I feel better, then I pay for it!
  2. I get over heated easily and don’t realize it because I love hot weather.  (although we lived in Palm Springs, CA for a while…it was too hot there!)
  3. I over extend myself.  I have a hard time saying “No”, I seem to think I can do anything during this time of year.
  4. I often end up eating things I shouldn’t, and get sick.  (I just don’t plan well.)
  5. Again, I get too hot before I realize it!
How I can over come these challenges?
  1. Well, this should be easy, just do less!  However, it’s often hard to tell when I might be over doing it.  I guess my best option here is to pay more attention to what my body is telling me.  And REST OFTEN.
  2. Limit the amount time I spend in the heat.  Don’t just trust that I can tell when I get too hot, or thirsty.  Set a time limit, and stick to it.  And DRINK A LOT of water!
  3. I need to remember, I can only do so much!  And sometimes, I can’t do anything.  I feel guilty when I tell people I will be somewhere and then I can’t show up.  I need to tell more people either, “No.”  Or “Maybe.”  If people don’t understand, then do I really want to be doing anything with them?
  4. Since I have gluten and fructose intolerance, there are a lot of things I can’t eat.  Too often I go out and don’t realize we may not be home when I get hungry.  I must plan better for this.  Make sure there will be food I can eat at parties.  The easiest way to do this is to bring something.  When we are going out and about I need to make sure we will be near places I can eat, or keep food with me.  I used to carry protein bars in my purse that were gluten free so I’d always have something.  Now, it’s more difficult.  I haven’t found a protein bar that doesn’t have things I can’t have because of the fructose.  I must find something!!
  5. I used to never get over heated.  I have a convertible, and I love to drive and feel the heat, and wind.  On Wednesday, I was on my way home and got stopped due to road work.  I was sitting still for about 20 minutes.  When I got home I felt sick, and dizzy.  I got way too hot.  How can I prevent this?  I have to keep WATER with me.  Not soda, WATER!  If I get stuck in traffic, I need put the top up and turn on the AC.
What do I want to accomplish this summer?
  1. Complete all the requirements for becoming a licensed foster parent.
  2. Perhaps take a vacation…something we haven’t done in a very long time.  Even a long weekend would be nice.  But traveling scares me…I’ll have to be prepared.  And we really don’t want to leave our dog.
  3. Take care of me.  (read *pamper* here)
  4. Read more books.  I really don’t know if this is possible, but I’ll give it a go.  (I love to read!)
  5. Enjoy my birthday!  (July 2nd)
  6. Spend time with hubby.  (I don’t really care what we do, just as long as we do it together.)
  7. Enjoy my pets.  Especially Sandy, on July 2010, the vet told us that Sandy had 6 months to a year to live.  I don’t think anyone told her!
  8. Enjoy driving.  (something I haven’t been able to do much for the last 2 years.)
  9. Enjoy our garden!  This is the first year we’ve tried growing a vegetable garden.  I keep looking at a friend’s garden and think…”Wow, why does their garden look so much better than mine?”   Oh yeah, they aren’t using all organic practices.  Let’s just say I now understand why organic produce cost so much more.
No matter what your plans for the summer, be sure to take care of yourself.  Keep things close to you that make you feel good.  For example: I take a bath every night right before I go to bed.  It really helps me get to sleep, feel more relaxed, and hurt much less.   I put lotion on every night, often my husband puts special peppermint lotion on my feet.  (My feet get hot at night and the peppermint makes them feel cool.)
Spend time with people who are good for you.  Avoid people who are toxic.  (you know who they are, you may feel like you have to spend time with them for some reason or another, maybe they are family, but you don’t.  Just say “NO”.  You can do it.  I know you can.)
Enjoy yourself.  That’s the most important thing.  Find ways to make your life easier, and more enjoyable.
Then pass it on.  Let other’s know what secrets you have found that make you feel better.
What’s your plans for the Summer?

What’s in your Medications?

On By WendyIn Celiac Disease, Dietary Fructose Intolerance, Fructose Malabsorption, Gluten-Free, Medical TestsLeave a comment

I posted this on my other blog Wendy Cooks, but thought it important enough to post it here too.

When you have a food allergy or intolerance it is very important to know what all the ingredients are in our medications.  However, it can be hard to find reliable information about the inactive ingredients.  I’ve asked my pharmacist to be sure to check the ingredients, but they are busy, and I’m sure some of them don’t actually check.   When I was diagnosed with Fructose Intolerance (malabsorption), I asked my pharmacist to check to ensure there were no ingredients in my medications that would make me sick.  He told me that I wasn’t on any liquid medications so I didn’t have to worry.  I wasn’t really happy with that answer, so I looked up the ingredients in the medications I bought that day.  I soon found that one of my medications had Mannitol in it, something I should not be taking.  It was easy to rectify, I just called my doctor and got a prescription for the regular tablets.  However, if I had taken the pharmacist at his word I would have wondered why I was continuing to get sick.  (and unfortunately, I had to pay for 2 prescriptions)

I was looking at the Health Resources listed on my library’s website, and I found this wonderful site.  Pillbox, is part of the US National Library of Medicine, it gives “rapid identification, (and) reliable information” on medications.  Pillbox, has two ways you can check for your drugs.

One is a Quick Search, and one is the Advanced Search.  I used the Advance Search, simply because I found it first.  The Quick Search has photos of the medications, it is still under development, so some medications may not have photos.

In the Advanced Search, just fill in what you know about the medication, and it will give you a list, choose your medication and it will give you all the information you need.  I tried it on a few of my medications, including an over the counter allergy medication.  One I put in the name, one I just put in the description, and one I just put in part of a description.  For most it found the medication I was looking for, the only one it didn’t find was one that is labeled as a pharmaceutical food supplement.  It gave all of the ingredients on all of the medications except the over the counter allergy medication, but they are listed on the box.

I hope this will help you and give you more peace of mind about the medications you are taking (or giving to your children).

http://pillbox.nlm.nih.gov/index.html

Please let me know if you use the Pillbox site, and how well it works for you.

Feel free to comment and subscribe to my blog so you won’t miss a post.

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.  : )

Hubby is Home!

On By WendyIn Life, Medical Tests7 Comments
Doctors just don't know.

I’m very happy to say that my hubby is home, and seems to be well.  Very tired, and is sleeping right now, but much more like himself.

The cardiac MRI came back great.  The brain MRI came back showing no signs of a stroke.

They really have no idea what caused this episode.  As we all know, that is hard.  Since we don’t know what caused it we don’t know how to avoid it.

One of the doctors he saw said he had the same symptoms about 10 years ago.  He said they never found out what was wrong, and it has never happened again. *shrug*

When we got to the ER yesterday Stuart’s blood pressure was very low.  They said he simply wasn’t getting enough blood flow to the brain, they have no idea why.

He is worried because his judgement was so impaired while this was happening.  He knows he should have come home when he first got double vision, and he feels normally he would have, but it didn’t even occur to him that something was really wrong.  He doesn’t remember most of the episode.  What he does remember I’m not sure if he really remembers it, or if he just remembers what I’ve told him.  He doesn’t remember being in the store at all.  He doesn’t remember getting to the hospital, being in triage, or the first few hours in the ER.  His memory starts with the second CT scan last night.  (Except he does remember when he threw up…I think that is very traumatic for him…unlike me, he’s not used to it.)

Oh, I did find the rest of the groceries.  It appears he took my car to the store!  Something he just doesn’t normally do.  I went to drive my car this morning to go the hospital and there in the front floor board were the sodas and milk.  (luckily we were buying this milk to spray on our squash plants to get rid of the powdery mildew on the leaves, not for consumption.)  It was also very strange that he put the groceries in the front of the car, he always puts them in the trunk.

My hearing is still down, and I got a bit dizzy today, but I took Valium and never started getting into a full spin.  I hope it stays that way.  I just don’t need that right now.  Not that I ever need it, but I really need to be able to be there for my husband.

Thank you all for all the best wishes and thinking of us.

It makes me feel so much better knowing I have you to talk to and call upon when I need some uplifting.

Thank you all for being my friends.

Scared out of my wits…

On By WendyIn Life10 Comments
Please, no more trips to Duke's ER department any time soon.
I have just come home from the hospital.  I’ve been there for over 11 hours with Stuart.  I’ve never been so scared in all my life!  We didn’t have eggs this morning and he went to the store to pick some up.  He was gone over an hour. (we live 1 mile from the store).  When he came in the door he was pale as a ghost, sweating profusely, and couldn’t walk straight.  He couldn’t talk right.  I asked if he’d been in an accident, he said no, he just needed to sit down.  Well I knew that wasn’t right.  I got him sitting down and ran upstairs to put some pants on (I had on thin shorts), and rushed him to the hospital.  He couldn’t get his words out, he was seeing double and he started throwing up.  I ran in the hospital asking for help – I was so distraught they thought he was coding…well heck, I thought he was dying!!  (Yes, my coping skills were not as high as they usually are.  I’m just so glad Stuart didn’t notice.)
 
They thought he was having a stroke.  They gave him a CT scan, and a contrast CT scan, they came back normal.  They asked if he could be dehydrated.  I don’t see how. We hadn’t done anything strenuous or in the heat for days.  He drank plenty yesterday.  (and said he “had a big pee this morning.”)  (of course, when they were checking him in they asked how much he weighed and he said 120, my husband is 6 feet tall, and a bit over 200lbs.  I don’t think he was thinking clearly.)  They thought his blood sugar might be low…nope.
They pumped him full of fluids, and after the first CT scan he threw up again, then went to sleep.  When he woke up, just minutes later he felt and looked much, much better.  
The doctor said it sounded as if he may not have been getting enough blood to his brain.  They are checking his heart out tomorrow.  They will be doing a stress test MRI in the morning.  Where they stress the heart and do an MRI at the same time.  He’s in observation right now.  I came home to get some sleep, but I’m still so stressed.  My head is roaring.
 
When I left he was acting and looked like his usual self.  But I keep thinking how close it came.  He can’t remember his trip to the store.  His receipt says he bought 2 doz eggs, 1 box cereal, 5 sodas, and 1 carton of milk.  He carried in one bag, it had the eggs and cereal in it.  There is no sign of the sodas or milk.  I have no idea what he did with them.  I can’t believe he drove home in that condition.  And he can’t even remember shopping at all.
I feel so lucky that he made it home.  I’m so afraid to lose him.  I’m so afraid for him.  

My hearing has been down for 3 or is it 4 days now?  I’m so afraid I’m going to have an attack at any moment, then how can I care for him?  How can I be there for him like he has always been there for me?  Yet, how could I not?  I’m so scared.

Stuart’s worried about his job.  The last guy who had his job left under mutual consent because right after he took the job he started getting sick all the time, in and out of the hospital.  Stuart is still a contract employee, he won’t be full time until July 16th.  They could decide not to hire him.
He’s also upset because he isn’t happy with his job, and doesn’t fill fulfilled.  I don’t know how to help him.  I wish I could get a job and make enough money where he didn’t have to worry about how much he made.  But I can’t.

Well enough about that.  He will be getting the cardiac test tomorrow morning sometime between 9 and 12.  If it comes out ok we could be home by 2pm.  I want it to be ok, but then again, I want to know what happened.  I want it to be something small they can fix.  I don’t want to be constantly wondering if it is going to happen again.  He did not realize he was doing so poorly.  He really wasn’t thinking clearly.  And now he doesn’t remember it.  The memory lapse is really scaring him.  He doesn’t really want me to know how scared he is…but I know he is.  And I don’t want him to know how scared I am…but I’m sure he does.

Hearing fluctuations

On By WendyIn Meniere's Disease4 Comments

I woke up yesterday and the hearing in my left ear is down, and I felt a bit off-balance.  I slept for 4 hours in the middle of the day.  Then I felt much better, but still my hearing was off.  I went on to have a nice night with my friends.

This morning I woke up and my hearing in my left ear is still diminished quite a bit.  When I turn my hearing aids on it plays 5 notes, I could only hear 2 of them in my left ear.  So, I’m simply not hearing certain frequencies.  Today I took it easy.  Still no spinning, but I’ve got the advanced warning signs.  Hopefully, it won’t happen…but.

I’m very stressed tonight, and got very upset earlier.  I know stress can exacerbate Meniere’s symptoms, but we all know, you just can’t turn off our emotions or what is going on around us.

My friends who were visiting this week left this morning.  I will miss them.  I wasn’t able to do a lot this week.  We went to a very nice party on Monday, but on Tuesday I woke with a sore throat and just didn’t feel well.  I thought I was in the sun too much on Monday and didn’t drink enough, but the symptoms continued.  I still have a scratchy throat.  I don’t know if I have a very, very slight cold, or if I have allergies.  My bet is on the allergies, but really I just don’t know.

Wish me luck that my Meniere’s warnings don’t turn into an attack.