Tag: Hope

A Day of Wonders (Cochlear Implant activation)

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease10 Comments

Tuesday, July 31st, I woke up to this beautiful site:

Tulips from my hubby! What a wonderful surprise!!

I had an appointment with Dr. Kaylie to check my incision at 1pm, and then I saw the audiologist immediately afterward.

Dr. Kaylie was pleased that I didn’t have as much pain or vertigo with this surgery.  The incision looked great, and all was a go for activation….well, to get my processor.  Dr. Kaylie already checked to make sure the Implant was working when I was in surgery, so that wasn’t a worry.  The implant was already working, but I couldn’t hear anything without the processor.  It was time to get the processor.  So off to see Sara, my audiologist.

It was very interesting to have the processor hooked up.  At first I just heard a series of beeps, (that’s what I was supposed to hear).  She was determining the volume each frequency should be. Then I was able to hear speech, and when I first heard her talk I busted out laughing!  She sounded like a cartoon, then I heard Stuart speak, and he sounded like a cartoon…heck, I sounded like a cartoon.  I kept giggling every time someone spoke. Everyone still sounds cartoonish.  A very silly cartoon, like on Rodger Rabbit.  It’s amusing but also quite difficult.  Sara reassured me that all of her patients tell her that it gets better, but everyone is different.  My brain has to be trained to hear a different way.  Now I’m not hearing as a normal person, I’m hearing by having my auditory nerve stimulated.  That kind of blows my mind. (I know my hearing will get better and better as time goes on, but I also know I may never hear like normal ears hear any longer.)

You would not believe how much stuff I got with my processors. Two HUGE boxes full of stuff.

These are the boxes all the parts came in. The coffee cup is in the picture to show scale. It’s a regular sized coffee mug.
This is some of the pieces for the Harmony processor. Yes lot’s of extra stuff. I’m so confused by how I’m going to organize all of this stuff….just look there’s even more in the next box…and this doesn’t include things I’m using, like the processor, and the battery chargers…ect.
This is some of the items that came with the Neptune processor. This is the processor that can be waterproof, and it clips on instead of going behind the ear….but all this stuff, I have to figure a way to organize it, and understand it all. : )

I was joking in the last picture, I was shown what everything did, I just need to work with everything to make sure I understand how it works without anyone telling me, or me having to look it up.  Especially all the connections to hook the processor straight up to the iPod, or things like that.  The different ear hooks for different things with the Harmony.  All the accessories just to make it different looking and some to clip the Neptune on to me, like an arm band and a lanyard…ect.
I have a drying box to keep the processors free of dampness.  Each processor came with one, but I like one better than the other.  There are different carrying cases, but neither will help organize all the pieces.  I feel like I got some very useful items, some fun items, and some useless items.  But it’s been like Christmas for a couple of days just playing around with all the pieces and figuring out how to wear them.

Here’s some photos of me with my CI hooked up with the different processors :

Me with the Harmony processor on….I was playing around with the different colored pieces you can snap on to it. The part that hooks to my head….by a magnet…that’s green, I have that in white, black, red, brown, and light brown….and of course lime green. Where the blue is, I have some funky snap on parts there, they are all silly – stars, rockets, rainbows…ect. Or I don’t have to wear one and it will be a light brownish beige.
This is the Harmony from the side. I have the larger battery on the processor in this photo, so the back part (where the blue is snapped on) is longer than it is with the smaller battery. Of course the larger battery last longer than the shorter one….about 4-5 hours longer I think.
This is me with the Neptune on. I just clipped it to my shirt to show what it looks like. When it is waterproof, it’s actually smaller (you take the controller off, so you can’t change the volume or anything when you are swimming, but who would have time?)
Please excuse the way I look. No makeup, in a sloppy t-shirt…and taking photos of myself. How atrocious! haha

So there you have it.  Me and my Cochlear Implant with the 2 processors I picked out.

Remember, picking out a processor is a very personal thing.  I would never say mine is the best, if you are getting a cochlear implant, do as I did, read up as much as you can on all the ones available, then decide which one will fit in you the best.

Also.  Everyone has different experiences with their CI.  I’m hearing words, some people do not hear words when it is first turned on.  Others hear words that are much clearer than what I am hearing.  Some of it depends on how long you have been deaf, I don’t know the other factors…I just know we are different.  So don’t think my experience is the same experience you will have.

The wonders continue!

OH….I did hear my cat purr last night, and it sounded like purring!  I was thrilled!  The one sound I’ve had a hard time getting used to is my own breath.  I feel that’s strange….hopefully I’ll get used to it soon.  Breathing shouldn’t be this loud….should it?  I’m sure it’s something that will end up just going into the background.  I remember when I got my hearing aids the sound of my hair brushing against them drove me crazy….later I didn’t even notice it.

Personify Your Health – #HAWMC Day 28

On By WendyIn Chronic Illness1 Comment

Prompt for today….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?

I’m again using one of the Bonus Prompts.  I liked this one more than the original prompt.  However, once again, I took a different take on it.  Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self.  I felt this answered all the questions put forth in this prompt, but with a little creative flair.

Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!

Outside of Maxk. by W. Holcombe
Inside if Mask
by W. Holcombe
Mask Inside Top
W. Holcombe
Mask Inside Bottom

Miracle Cure – #HAWMC Day 20

On By WendyIn Chronic Illness1 Comment

Today’s Prompt:  Miracle Cure. Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer 😉

image is free clip art (forgive me I lost the site address I got it from)

My Miracle Cure would not be for a cure of a disease, it would be to ease the pain of so many….including myself, I’m not completely altruistic.   A world where chronic pain, and severe acute pain could be managed with ease.  No weird side-effects.  No matter what illness you have.  Fibromayalgia pain – no problem,  Pain from Cancer – gone, Chronic headaches – not any more, acute migraines – no worries!…… You can be helped.  This would be the miracle I would like to see happen.

This is a fake article.  Do not take this post seriously.

Breaking News: Pain Relief for All

FDA Approves Painfree –

First Non-Addictive Pain Medication – for the Management of Acute and Chronic Pain

HOPELANDS, England and JUSTINTIME, N.J., April 20, 2012 /PRNewswire/ — Panacea Pharma Ltd., and its subsidiary, Panacea Pharma U.S. Inc., today announced that the U.S. Food and Drug Administration (FDA) has approved Painfree (nomorsus) for the management of severe acute and chronic pain. Painfree marks the first FDA product approval for Panacea Pharma. Painfree is marketed as NoMorPain (nomorsus) in Europe, where it is presently available in five countries.

Severe Acute pain comes on quickly but lasts a relatively short time compared to chronic pain. Chronic pain persists over time and is often resistant to medical treatments.”Painfree is an important new option for patients with severe acute and chronic pain,” says Ivanna Ubetter, chief executive officer of Panacea Pharma. “Painfree, is designed to deliver medicine in a rapid, but controlled manner, and provides patients with an effective alternative to manage their pain.”

“As the first non-addictive pain management drug in the U.S., Painfree provides a new approach to managing the often debilitating and inadequately-treated episodes of acute and chronic pain that millions experience,” said Ibe Live, M.D., director at Paeon Research LLC., and clinical investigator for Painfree. “Current treatment options typically utilize short-acting oral opioid medications that cannot provide pain relief without many side effects, often leaving the patient with little quality of life. Painfree’s non-narcotic formulation is much better suited to help patients control their pain, and continue living the life they want.”

Ubetter said, “Panacea Pharma looks forward to working closely with health care professionals to ensure safe and consistent access to Painfree for the patients who are seeking relief from unbearable episodes of acute and chronic pain in.”



Pinboard – #HAWMC Day 16

On By WendyIn Chronic Illness5 Comments

Today’s Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you
pin? Share the images in a post and explain why you chose them.

I chose to pin a few more than 3 things, and probably could have done more.  However, I only pinned photos and artwork I created.  I chose these images because I felt they were closer to me and expressed what I wanted to say many times.

Here are the photo’s I shared on my Pinterest Board, titled, My Illnesses….pluses and minuses.

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Dream Day – HAWMC # 14

On By WendyIn Chronic Illness1 Comment

Today’s Prompt: My Dream Day. Describe your ideal day. How would you spend your time? Who
would you spend it with? Have you had this day? If not – how could you make it
happen?

My dream days now are much different from they used to be.

Today I take one day at a time.  If I have a good day, I try to make the most of it.

Falls Lake, Durham, NC
photo courtesy of http://www.city-data.com

The other day is a good example.  I woke up not feeling the greatest, but I rested, and in the afternoon it was nice and warm and I felt better.  So I asked my husband if we could take a ride that afternoon.  (I’m a very lucky person, my husband works at home and can work flexible hours.)  We decided it would be a nice day to take an afternoon ride with the top off my little yellow VW bug.  (even though I can no longer drive, we decided to keep my car as the family car because it gives me such joy.)  We went for a ride by the lake, and I saw a huge hawk which flew very close to the car.  It was a beautiful sight.  We drove through a little town and had a drink and snack and came home.  I got a bit too hot and we had to put the top up and turn the air on, but it was a lovely afternoon.  I didn’t feel well on the way home, but I hated for our afternoon to end.

Later, after we got home and I rested a bit, I was delighted that I felt better and was able to help with dinner.  Something I so rarely get to do, and I love to cook.  This day I was able to make nearly the entire meal with minimal help.  A good day indeed.

So this was a wonderful day.  A “dream” day.

photo from Hilton Garden Inn, Kitty Hawk, NC

It doesn’t have to be the perfect “dream” day to make me happy.  However, I still dream of going to the beach with my husband, I love the ocean.  Smelling sea air, feeling the ocean breeze and the warmth of the sun on my face, having long walks on the shore, and sitting on a porch reading as the sun disappears over the horizon.  Eating fresh seafood caught straight from the ocean, and return to our place with naughtiness on our minds…  Hopefully, days like that will happen again.  However, if they don’t, we are very determined to live every good day to the fullest.

Who knows on my next good day, it may be a day he has off, and we can actually take a picnic down to that lake, and take a little walk.  It may not be the ocean, but it would be a pretty body of water (and hubby loves the woods more than sand I think.)

I may be having a rough time with things right now, so I think it’s even more important to make sure to acknowledge every good moment, and celebrate every day…no matter if it’s a perfect “dream day” or not.

I write about my health because – #HAWMC Day 4

On By WendyIn Chronic Illness7 Comments

I started writing about my health because I wanted to log how my health was improving.  It was after a couple of surgeries, and I was ready to start exercising, eating better, and making some grand changes in my life, but I still wanted to keep up with my symptoms and start talking to others who had some of the conditions I did to find out how they dealt with them.  I knew not all of my conditions were going away, I just didn’t understand how much they could take over your life.  (for a list of my conditions, please see the page above, titled “My Ants”)

Soon my health started getting worse, and my writing became more important to me.  Reaching out to others became more important.  Finding out all I could about my illnesses was very important, I had to know what was going on, and I needed to share what I found with others.  I felt alone, and I needed to make sure others didn’t have to feel the same.  If they could find me, then they didn’t have to feel alone any more….a grand idea I know, not everyone will click with me, but they may read something here and think…”Yes, I feel that too.”  I soon found out way too many people did feel the same.  One of the ways we no longer feel alone is through our blogs, and our online communities.

Now there are many reasons I write about my health –

  • to get to know others who are in the same or similar situation I’m in.
  • to get more information out there about my illnesses
  • to let people know they aren’t alone, and so I won’t feel so alone
  • to promote more knowledge about my conditions, especially Meniere’s and Intracranial Hypertension (most people don’t know much about those.)
  • to put a face on invisible illnesses
  • to make it easier for people to talk about having a chronic illness
  • to learn ways manage my illnesses easier.  (for instance, using aids for assistance, like my walker or hearing aids….)
  • because I love myself, and writing makes it easier for me to accept my illness, and to constantly adapt to new expectations.
  • and one huge reason I write about my illness – so I won’t drive my husband crazy constantly telling him every little detail over and over and over!

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.

 

Update for Week 1 recovery! it turned out to be a better day!

On By WendyIn Chronic Illness7 Comments

Every day since I started having the constant vertigo, I have tried to slowly raise myself in bed to the point where the vertigo wouldn’t stop then I’d got back flat.

This evening, I slowing got myself on an incline, then scooted up some more…and more….and I was sitting, without the world spinning.

Not only that, I pushed it even further!

I couldn't help singing..."Put One Foot In Front of the Other...."

I went to the bathroom without falling, or spinning!!  I made it back to bed too!

I giggled the whole time!!!

I still have a lot of disequilibrium, and couldn’t move very fast, but the vertigo stayed away.  It might not have if I hadn’t taken it as slowly as I did…but it’s much better than yesterday!

 

One week after surgery… So, recovery day 7.

On By WendyIn Chronic Illness7 Comments
ReCOVERY - w. holcombe

I must say, if I didn’t know other’s who have been through this just as bad as I’m going through it now, I would be VERY discouraged.

I’m nauseous most of the time, I still can’t lift my head, can’t get out of bed…every day I think…well, this is the worst day so far.

I’m anxiously waiting for a day when I think….Oh this isn’t as bad as yesterday!

The pain in my ear has increased, can someone please remove the ice pick that is being jabbed in my ear!

I’m also having intense pain down my neck, I can’t open my mouth as wide as I should, the whole left side of my throat hurts ….  You know, I feel like I have the mumps, on just the left side.

I’m grateful that the worst of the pain is a sharp pain that doesn’t last very long.  The aching pain in my ear, is always there, but it’s not nearly as bad as the “Out of the Blue, Slam me in the Head” type of pain.

My fever seems to be less than it was, but I’m still achy all over, and the swelling is almost gone.  (see there is some good news!)

My ear still isn’t draining like it did the first time, but it is still bleeding a bit.  Not a lot, but ick, blood coming out of your ear…need I say more?

So why is it that whenever I’m sick, things always get worse at night?  I run a higher temperature, the pain is more intense…  Stuart thinks it’s so very odd, but I remember as a child, whenever I was sick, I would always be worse at night.  Is this strange, or do other’s have this happen too?  Is there a reason for it?

I think that’s about it.  I’m sad that this recovery is so taxing.  I’ve mentioned before, when I close my eyes the vertigo gets more intense.  It’s so very, very hard to fall asleep, or to sleep well.  I am completely exhausted.

While I’m awake it’s a bit easier to deal with, but when I’m asleep, I’ll start to roll over, and Whoosh! goes the Vertigo (yes, you must say that to the tune of Pop! Goes the Weasel!)

Perhaps tomorrow will be a …. “this isn’t as bad as yesterday” – day!

Helping Symptoms with Hypnosis

On By WendyIn Chronic Illness13 Comments
Hypnotic Healing by Judith Westerfield - image stolen from her website.

I asked my friend Judy from Creativity to the Max if she thought some of her Hypnotic Healing CD’s could help me calm down during an attack.  I’ve been trying chanting and visualization techniques, which seemed to help a little, but I wanted more!!  : )

To give a little background, so you don’t think I just asked some quack about hypnosis tapes.  Judith Westerfield is a licensed Marriage, Family Therapist, and Certified Clinical Hypnosis and Guide Imagery Therapist.  You can read more about her here: http://judithwesterfield.wordpress.com/judy-judith/

She was kind enough to send me 3 CD’s to see if they would work for me.  I’m very pleased to say they help a lot.  Whenever I start to feel the anxiety building, and the fear that an attack is imminent, I take my meds, and hook my hearing aid up to the computer so I can hear Judith’s CD’s.

Since I started doing this, my attacks have been much milder, even on the day last week when I was spinning, full out rotational vertigo watching the room just spin.  It wasn’t as bad.  I didn’t even throw up, a miracle in itself.  I don’t know if the not throwing up part can be contributed to the CD, we were pumping in a lot of Phenergan, but I know the CD really helped me stay calm, focused, and relaxed.  Yes, I said relaxed.  (as relaxed as you can be with the world moving all around you.  But I have to say, I was more relaxed than I have been during a vertigo attack.)

The three CD’s she sent were Healing Your Body – Healing Waters, Heart to Heart with Love, and How to Listen so your Symptoms will Talk – How to Talk so your Symptoms will Listen.  I have found the Body, and Love CD’s to be invaluable.   I’m having trouble talking with my symptoms, I think deep inside, I don’t want to talk to or listen to them.  I just want them to go away, and I know they won’t so I don’t want to talk to them   I think of them more like an unwanted guest you just ignore so they will go away.  I need to work on that.

My favorite is Healing Your Body – Healing Waters.  I love to use water as a relaxation guide.  Another of my dearest friends would say it’s because my astrological sign is Cancer, a water sign.  I can just hear her, “Of course, you need water around you!  Let it feed your soul, you need it.”  (I love you Kym)  The sound of water makes me feel tranquil.  I’m simply more at peace when I’m close to water.  So having a visual guide that centers around water, has been very helpful for me.   The Heart to Heart with Love CD, is helping me learn more compassion for myself and others.  I need to love myself, as I do others.  I can’t continue to criticize myself for being ill, and not being able to do things.  I would never allow anyone to say those things about a friend of mine, why would I tolerate me saying it about myself?

The CD’s are meant to be listened to often, in a quiet place, a type of meditative feel.  I do this, but I also just have them on listening when I’m on the computer and or reading.  Even when I’m not concentrating on the words, the calm, soothing nature of the CD reduces my anxiety, and creates an all over sense of well-being.

I talked to my therapist about these, and she thinks they are wonderful.  She has made hypnotic recordings for some of her patients, and is thrilled I’m using this as a tool to help with my anxiety, and be more at ease with my symptoms.

I’ve been looking over the CD’s Judith offers and I want so many of them!  I especially want Healing your Mind, Pain Relief; Transforming Stress and Anxiety into Calm and Comfort, Weight Control, and I really wish I had the Preparing for Surgery CD right now, but my surgery date was scheduled so fast I couldn’t order it and get it in time.  Judith also creates personal CD’s focusing on your own special needs and using your own focal imagery.  I’m seriously thinking about getting her to create one for me.

I’ve listened to some recording that were supposed to heal through self-hypnosis, but they didn’t really work.  I don’t know if it was my mindset at the time, the voice of the person recording it, or if they were just junk.  So, I had my doubts about how well these would work.  I’m very pleasantly surprised.

For more information on Hypnosis and Interactive Guided Imagery(sm) see Judith’s web-site:

www.HypnosistotheMax.com

Yes, I still  have vertigo, I still have symptoms, but finding aids like this have made it easier to deal with them.

As everyone with Meniere’s knows, we may not have attacks every day, but we live with it every day.  Some days the symptoms may be minimal, but the fear is always there, the unknowing….when will it happen next.  Will I be home and safe?  Will I be driving?  Will I fall and get hurt?  Will I be in a crowded area?  How bad with the next attack be?

We live with PTSD (Post Tramatic Stress Disorder).  I have one doctor that describes what we go through as being on the front lines during war.  Soliders knows they will be under fire, at some point, but they never know when.   This is a disease of Random Punishment.  We have to use all the tools we have to keep ourselves sane, and safe.

I found these CD’s and Toni Bernhard’s book How to Be Sick a great help.  They both address my issues, and help me accept and control the situation.  I don’t feel as out of control.  I may not be able to control an attack, but I can control my life around them.  I don’t have to live shell-shocked all the time.

Have you found anything that works for you?  Anything that makes coping with your illness easier?

Please share, we all need to find our “happy place” or at least a happier place some times.  We can all use some help getting there sometimes too.