Going to the Movies with Hearing loss

I must say, I really missed going to the movies.  It had been years since I graced the dark room, sat in the good seats, and enjoyed a movie in the theater.  For too long have I waited until a good movie came to video.  I often just missed them all together.

I know now that all theaters are required to have closed captioning for all digital movies*.   I admit it was intimidating for me.  I asked at one theater a long time ago and they had no idea what I was talking about, even though they had a sign in their window that showed they have have equipment for the hard of hearing.

Stuart and I decided to take a chance and go to the theater close to us.  It said on line that they have the equipment and they have it available for almost every movie.  We decided to go to a movie that had been out for a while, during a matinee.  It was the right choice, we were the only ones in the theater, a great way for me to find out just how to use the closed captioning device.

captions
This is like the caption box I used.  image source 

The device looks like a box connected to a flexible arm with this round object on the other end.  The round object fits perfectly in your cup holder, you use the flexible arm to position the box where you want it.  I put it so that the captions would be at the bottom of the screen, like it is at home.  It took me a while to figure out exactly how I wanted the box.  I was grateful that some of the trailers were captioned so I could get it right before the movie started.  We sat in seats in the center, kind of up front.  Not the seats closest to the screen, the first row after you go up the stairs.  I found this to be too close to put the captions in the right place.  We needed to move back a couple of rows, it worked perfectly there.

captions for theater
this is what the captions look like.   Image source

We saw the Batman Lego movie, and it was a hoot.  It was great to see all that action and the cute little quips that they made about Batman through the ages.

lego batman
image from Wikipedia

I will be seeing more movies in the future.  If you need closed captioning to see a movie, I suggest you give it a try.  The first time you use it I suggest going to a movie that has been out a while so the theater won’t be full.  Then you can move around to find the perfect seat for you to see everything and see the caption box too.

I admit it was a little different because the captions are close to you and the movie is far away.  It took a minute or two for me to get used to this.

Some theaters offer glasses you can use and they transmit the text right before your eyes.  I don’t think these would work with me since I already wear glasses.  I heard that the glasses can get heavy.  Here’s a link to read all about the glasses.

captions sony glasses
this is an example what some of the glasses look like.

Other movie theaters have a hearing loop.  “A hearing loop is a wire that circles a room and is connected to a sound system. The loop transmits the sound electromagnetically. The electromagnetic signal is then picked up by the telecoil in the hearing aid or cochlear implant.”  Hearing Loss Association of America

hearing loop
image source here

My cochlear implants do have telecoil (T-coil), but I haven’t seen a theater around here that offers this option.  I hope to try this option in the future.

Let’s all go to the movies!

*according to a ruling on November 21, 2016, theaters are required to accommodate persons with disabilities, including closed captioning for all Digital movies.  You can read more about this on the ADA site. 

 

Panxiety

Today I’d like to introduce Lorraine of My Frilly Freudian Slip.  Lorraine is a good friend of mine and the author of beautiful poetry and prose.  You will find her writings at myfrillyfreudianslip.wordpress.com.

Lorraine is fighting Bipolar I and severe anxiety.  They can’t find medications that work for her.  Following you will read a first hand account of what it is like to live with “Panxiety”.

IMG_20160912_145828115 - Copy
photo by Lorraine of My Frilly Freudian Slip

“Pounding heart. Constricted throat. Knotted stomach. Dread washes over me. A panxiety attack.

Coming, unbidden, from some where inside my mind; spilling into my consciousness and flooding my body with anxiousness.

Breathe in through nose to count of ten, fill lungs, feel belly lift. Hold. Breath out slowly to ten.

Drift – visualize place of calm. Walking on beach, tide tickling toes. Finding beach treasures: sea glass, sand dollar. Smell sea tang. Feel breeze against skin.

But the panxiety is stronger – can’t focus; can’t concentrate. Pace. Half finished tasks lay scattered around the house – stopped in mid-flow. Forgotten. Pace.

Distract. Words on page, coloured pencil on paper. But, hands and mind shake.”

Daily, I deal with panxiety – a panicky anxiety attack – lasting minutes or hours. Sometimes the dread follows, flows all day. Few solutions to the foreboding; apprehension. Becomes so hard to concentrate that writing, my usual distraction from mental and physical pain, is almost impossible. I lose words; sentences fly off into the ether.

There are times I can force myself to lay still. To tell myself one of my “head stories.” Perhaps to drift off to sleep for awhile. This doesn’t mean I stay under long, nor that I wake calm. But when I can “nap,” my emotional and physical self gets a break from the relentless panxiety.

I have to confess turning to medication more than meditation when the attacks are furious and frequent. Always haunted by anxiety, these spells have increased in number and severity. Linked to a series of traumas, mental collapse and going untreated for several years afterwards.

I am on the bipolar 2 spectrum with chronic depression, rapid cycling, and bouts of hypo-mania manifesting in over indulgence and obsession. My bipolar isn’t responding well to medication; I am mostly teetering on the edge of instability, often falling all the way in.

Depression is my background music. Even when the volume is turned up, I can become agitated and anxious. As my depression can not be treated with anti-depressants (they don’t work), it is hard to level my mood. These swings are often accompanied by panxiety.

My anxiety has never been fully addressed. The medication I am given is not in a sufficient dose to stop the attack completely. And, I take nothing that addresses it on a daily, 24 hours basis. I seek to gain control of these attacks by other means than Ativan or Klonopin. However, often panxiety, like depression, wins. Doesn’t mean I stop fighting – I just have to do battle harder and stronger the next time.

Seeing a therapist has given me an outlet; a safe space to talk about how I feel. A person who helps me explore my mental health issues including honouring and acknowledging the traumas underlying the escalation in my panxiety attacks. Therapy can be the life-line that grounds me while I do battle. A reprieve to polish my armour.

Lorraine  myfrillyfreudianslip.wordpress.com

Oh Poop! Side effects are they worth it?

image from clipartfest.com

On January 25th I wrote about A Visit to the Migraine Doctor, in it I mentioned that my doctor was putting me on a new drug.  Diamox.  I haven’t been tolerating this medication very well.  I haven’t been posting as much as usual, because of some of the side effects.

After being put on this medication I started having extreme GI distress.  I had acid reflux, nausea, and diarrhea.  These became increasingly worse.  The acid reflux and nausea made it impossible to get a good night’s sleep.  The diarrhea was worse, there were times I didn’t make it to the bathroom.  I had no warning.  As I started a new diet about the time I was put on Diamox I thought the GI distress was caused by the diet.  I was wrong.  I ceased the diet and still the GI distress continued.

My cognitive dysfunction has been much worse than normal.  This is the main reason I haven’t been writing.  I just haven’t been able to think straight enough to process my thoughts.

image from http://www.aids.gov

There are times you have to decide if a medication’s benefits out weigh the side effects, as this medication did not reduce my headaches (if anything they have been worse) I’d say it’s not worth it.  So I’m officially off this medication now.  I don’t know how long it will take for me to get back in the grove of things here, but I’m happy things are getting back to my normal.

There are medications that cause minor side effects and I’ve decided to stay on them because they were helping more than the side effects were causing me trouble.  For example, Topamax changed my taste of certain foods.  This was minor when it helped my headaches.  (Unfortunately it isn’t helping my headaches like it used to, so we are working hard to find a new one that does.)

Until we can find a new drug that helps my headaches I’m stuck.  When I have a migraine, which is most of the time, I can’t think straight.  When I was on Diamox my thinking was even more muddled.  Now that I’m off it, I hope some of my cognitive function is returning.  I always have a bit of cognition problems due to Migraines and Meniere’s.  Speaking of cognitive disfunction, I am having a hard time writing this post.  I keep reading it over and over and forget what I just read.  I’ve been trying hard to keep up with other’s blogs but my memory is not working as it should, so I’m not absorbing the information a lot of the time.  I’m confused.  I can’t think straight, even more than normal.  I stopped Diamox a couple of weeks ago, I’m feeling much better, but my brain is still catching up, I think.

You must decide for yourself if the side effects of a medication is worth the benefits.  Of course, this drug was not worth it, as it didn’t have any benefits.  However, even if it had been beneficial I feel the side effects would not have been worth it.  Trade less migraines for extreme GI issues and brain fog?  I can’t do it.

Are there medications you are having side effects from but you still feel it’s worth taking?

Have you stopped a drug because of side effects even if it helps?

 

Rare Disease Day, I have a rare disease.

rare-disease-day
rarediseaseday.us

Today is Rare Disease Day. “Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.” (rarediseaseday.us) There are more than 7000 rare diseases and disorders in the US. That comes to over 30 million people who have a rare disease. It’s not so rare huh?
Some of you may know that Ménière’s Disease is a Rare Disease, it is listed on the National Organization for Rare Diseases (NORD) registry.  The information they have listed about Ménière’s  Disease is interesting.  Please go check it out.  Even I learned a thing or two.  🙂

Benign paroxysmal position vertigo (BPPV) is also on the Rare Disease registry.  You can read more about it here.  I’m very impressed by the information available on NORD, if you have a rare disease, or want to know more about one, I urge you to look it up on the National Organization for Rare Diseases (NORD) site.

Having a rare disease normally means that there is little known about the disease, we go from doctor to doctor hoping to find out more.  Hoping to find help.  More research is needed for all rare diseases.  Contact your local representative to speak out for your disease and make sure more research is provided.  You can find out how to contact your representative here.

“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S.”  *from NORD website

 

Do you have a rare disease?  Curious, have you ever contacted your representative about it?

 

 

 

Mindfulness Monday – Lao Tzu

tulip-magnolia

“When you realize there is nothing lacking,
the world belongs to you.”

~Lao Tzu

 

“Nature does not hurry, yet everything is accomplished.”

~Lao Tzu

 

 

*all images on Picnic With Ants created by W. Holcombe unless otherwise noted.  Please do not use without permission.

Mindfulness Monday – Love

hearts-black-and-white

 

What is the difference between “I like you”
and “I love you”?

Beautifully answered by Buddha:
“When you like a flower, you just pluck it.
But when you love a flower, you water it daily.”

 

“The most precious gift we can offer anyone is our attention.
When mindfulness embraces those we love,
they will bloom like flowers.”

~Thich Nhat Hanh

 

All artwork shown on Picnic with Ants created by W. Holcombe, unless otherwise specified.  All rights reserved.  Please don’t use without permission.

A visit to the Migraine Doctor

headache
ocular migraine, by w. holcombe

You may recall from my last visit to the migraine doc  (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies.  Well, she hasn’t given up.

I saw her last week and it was a long visit.  I am always impressed when I go there that she never seems to be in a hurry.  I never feel like she is rushed to get to the next patient.  It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy.  During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying.  I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory.  He must have been worried about me.  I did understand most of the visit, there are just little things I remember her saying that I wish I remembered.  Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines.  Who knew?  I don’t know if that’s what she said, but I’ll keep taking it.  It helps fall asleep anyway.

She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again.  I have fluctuating CSF, it tends to run high.  The migraine medications that I’m on help keep it lowered.  She felt that we need to put me on a drug that will increase this effect.  So I was taken off Topamax and put on Diamox.  I’ve been on Diamox  before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.

She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.

The weird things is, if I have high CSF I should have a worse headache when I lie down.  Sometimes I have a bad headache when I wake up but often I don’t.  When I have a bad headache, it doesn’t get better when I lie down.  hmmmm.  Makes me wonder.  But then there’s the eye thing, she did say it was a slight bulge.  Well I’m just not convinced and I don’t want this drug to make my pressure go too low.  It’s a very strong diuretic.  I’m peeing a lot, but my body will get used to it I’m sure.  I’m a little more light headed, but that could just be me, but it could be the drug.   I feel very confused, this one has bothered me a lot, but it says it will go away shortly.  If it doesn’t I won’t be on this drug long.  I do not like being so forgetful.   I was angry at Stuart yesterday and couldn’t remember why!!  I don’t get angry at him often, you’d think I’d remember why I was mad at him.  I think this drug is making me grumpy, or maybe that’s just me.  I also think it’s reducing my appetite, as least that would be a good thing.

To sum up, I’m on a new drug (or back on an old drug).  I’m not sure about it.  I’m keeping an open mind though.  I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all.  I go back to the migraine doc in 2 months.

I can only say: Chronic migraines and New Daily Persistent Headaches suck.

Mindfulness Monday – 31 Rumi

red-leaf
photo by S. Holcombe

“Do not worry that your life is turning upside down.
How do you know that the side you are used to
is better than the one to come?”

~Rumi

“If you only say one prayer in a day, make it
‘Thank you’.”

~Rumi

5 minutes

misc-photos-004
w.holcombe

#MYMIGHTYMONTH  prompt
Set a timer for 5 minutes.How are you feeling right now?
Jot down your thoughts, and try to limit yourself to just 5 minutes.

5 minutes for me to write a blog post will be a miracle, but if I don’t count editing, maybe I can get something out that will mean something.

How do I feel right now?  Less dizzy than I have in a week.  I’ve had vertigo so much this week, especially on Monday, I didn’t get Mindfulness Monday out this week.  This is the first Monday I’ve missed in over 7 months.  I’m so disappointed.  I felt guilty at first, but I had no control over it, so I “just stopped”  🙂

I’ve been able to knit some when the spinning in my head would slow down, that’s been nice.  I’m making a blanket now for Project Linus.  They make blankets for kids who need one.  It can be a baby or an older child.  They could be sick in the hospital, or homeless, if they need a blanket, they get one.  It’s a great project and I’m excited to get involved.  I may not be able to make many blankets, but to be able to do anything, it’s wonderful.  To be able to volunteer doing something is giving me more of a sense of purpose.

Well, that’s 5 minutes.  and that’s okay because I really don’t have much more to say.   I haven’t been feeling well, don’t worry, it’s just my normal way of not feeling well.  I’m grateful I’m not sick-sick on top of it.  (knock on wood)  There are so many bugs going around I hope none of you are sick.

How’s your week going?  It’s supposed to snow here tonight.  It doesn’t snow often where I live in NC, so people aren’t used to it.  It will be pretty for a few minutes then people will go crazy on the roads, and I’ll be ready for it to go away.  Truthfully, I wish it never snowed.  As the weather changes my head is killing me.  As it gets colder, and it is, I ache more.  I really don’t like cold weather.

Do you like the snow?  Does it make your symptoms worse?  Or do you love the snow?

Just Stop

My theme for this year.  Just stop.

  • Just Stop and listen to my body more.
  • Just Stop and listen to others.
  • Just Stop and think before doing.
  • Just Stop and think before speaking.
  • Just Stop and get centered before moving.
  • Just Stop and think before putting that food in my mouth.
  • Just Stop trying too hard.
  • Just Stop feeling guilty for things I can’t change.
  • Just Stop and meditate.

Just Stop.

relaxing
Image source here