Sleeping

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

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Mother’s Day is very hard for some people

image from farmhousecountrystyle.blogspot.com

Every year since my mother died Mother’s Day has been bitter-sweet.  Everywhere I look people are telling you to get in touch with your mother, let her know how much you appreciate her, and how much you love her.  I’m sure there are many people who have lost their mother or perhaps lost a child, or for those who have mother’s who are not someone you really want to thank….you know they are out there….and this holiday is very, very hard for them.  Just as it is for me.

This year, Mother’s Day is especially hard for me.  This year, I expected to be a mother, a foster-mother yes, but a mother non-the-less.  That dream was taken from me this past year, and it won’t be coming back.  I’m okay with this decision, but it stings right now.

Mother’s Day is also very hard this year because I lost my little baby girl….yes, I’m talking about Sandy.  I know many won’t understand because she was a dog, but she was my baby for 19 years.  She was more of a constant in my life than any human.  And yes, it may sound silly, but most Mother’s Days I got a card from her and Max.  (yes, I’m not delusional, I know Stuart sent the cards, but her little paw print signed it….and I was her mommy.)   Stuart would joke around and make a special breakfast for me saying that our children insisted that he do so.  Yes, this Mother’s Day will be very hard.

This week Sandy’s memorial bench arrived. It’s sitting on our front porch, but we haven’t been able to inter her remains yet.  Yes, that will probably happen this weekend.  Her ashes are in a little box, this will be sealed in her special box (where we kept her stuff), with her special blanket, sweater, collar, just little things we think she would have like to have.   All of these things will be sealed in an airtight container, then sealed in the bench.    In our will we have a provision, when we die we plan to have our ashes mixed, Sandy’s ashes will also be mixed with ours.  (Max’s too, but since he is still alive, I don’t want to say things like that.)

Are we strange for caring so much about how our dog is cared for after death?  Are we the only ones like this.  I hope not.

But I’ve wandered away from the point of this post.   For all of those who find holidays like Mother’s Day, Father’s Day, Valentine’s Day, and even Christmas hard, you are not alone.  For all of you who now someone who has a hard time during these holidays, reach out.  Everyone needs to feel a little love.

Cochlear Implant coming soon….

On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”

On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%.   So it’s pretty obvious I don’t understand a lot of what’s being said.

On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant.   Yes!  I am!!

Advanced Bionics – Harmony- Cochlear Implant.

Next step.  Insurance authorization.  It can take 4-6 weeks.  During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research).  Also, during this time I need to think of any questions I may have, and be prepared to ask them all.  However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now.  I’m sure questions will arise though.

After the insurance approves everything, we just have to schedule the surgery…and it’s go.

About 2 weeks after surgery they will turn the device on.  I’ve been warned I may not hear much at first.  As time goes on my doctor thinks I will hear better and better.  If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI.   They say if you need 2 it’s better to get them close together if possible.

I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.

Right now, I’m excited at the possibility of hearing again…but cautious.   I know hearing through a CI is not the same as hearing normally.  I understand all surgery carries some risk.   So naturally I’m cautious.

But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again.   Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come.  I will be able to hear again.

**In other news about me……   The migraines are so much better!!!  I had another round of steroids, and hopefully they have stopped the cycle.   (There is some doubt right now that I have Intracranical Hypertension.  If I do, it has not escalated, and the medication that should help didn’t help much.  The migraine treatments have helped much more.  My last lumbar puncture did show high CSF, but not very high.  Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)

Recap – #HAWMC May 1st

Today’s Prompt – Recap HAWMC. You did it! 30 posts in 30 days. Which was your favorite prompt? Which was the most difficult? Which ideas will you reuse? Who was your favorite fellow blogger?

ASL sign for FINISHED!!
Image from utb.edu
YES!  I did it!  With one of the roughest months in my life, I still did it!  I didn’t even use the 2 off days they said I could have!  I accomplished something I set out to do!  Woot!

Look I actually created a real Word Cloud
from http://www.tagxedo.com

I’m so pleased that WEGO Health gave us this opportunity.   They have done so much to bring Health Activism to the forefront, in a very short amount of time.  Thank you WEGO Health!

WEGO Health wants some feedback to this monthly challenge.   I probably gave them much more information than they need.   I’d love to hear what you about my different posts for the month!!

Which was my favorite prompt?  I admit my favorite post of the month was not one I thought would be my favorite prompt…but as with many I took my own interpretation of it.  (and I think that’s a great way to make a prompt work for you…change it enough to make it speak to you.)  The prompt was to create a theme song for my blog.  Since I have hearing difficulties I originally thought…I can’t do this.  However, I decided to use this opportunity to bring attention to my Sounds of Silence…the tinnitus I hear every day, even if I can’t hear anything else.  You can find this post here.  My Sounds of Silence. I’m especially proud of this post.  My friend Vincent Morrison (who worked on the sound production for me) and I had a hard time putting it all together, but I think it shows how different tinnitus can be for people.

One of the bonus prompts I really liked was the first one. “I used to be….but I’m not any more.”  This put forth a lot of my feelings but still I was able to leave a positive spin on it.  This was the first prompt I used, and think it was a great starting point for the month.

Which was the most difficult?

This is a hard question to answer.  Do they mean hard as in emotionally hard to write, or hard because I didn’t like it?

I decided to do a list of the prompts I found difficult to work on because they hit a nerve….and then a list of prompts that were hard simply because I could not get into them.  This doesn’t mean they were bad prompts, simply that I had a hard time interpreting them to suit me.  That’s one reason I really liked receiving the Bonus Prompts!

Prompts that were difficult because of feelings they brought up:

Prompts I simply couldn’t get into.  I know others who really loved these prompts, they were just difficult for me to get started on.  (again, why I liked having the option of the Bonus Prompts)

  • Health Time Capsule  (I read some great posts from this prompt, it simply wasn’t one I could get going one
  •  Ekphrasis post   (I tried and tried to do this prompt, I thought it would be easy for me because I am an artist, but my post just kept getting longer and longer.  I’d have to practice this type of writing to be able to do this post…and well I didn’t have time for that.   But again, others did an excellent job!)
  • Pinboard…I don’t like Pinterest.  I find that a lot people do not give credit to the creator of the images on this site.  I would have liked this post better if it just said to list images.  But again, a personal feeling on my side.  Lot’s of people LOVE Pinterest, and that’s great.
  • Madlib Poem – This just really didn’t do it for me.  I it took so long to fill in all the words, then the poem came out not meaning much.  It’s great for a comic day, a little relief from talking health all the time, but I was confused.  And with the brain fog I have with my illness, I was unable to enjoy this like I thought I might.
  • 3rd person post – I tried to write this post, but found trying to talk in the 3rd person made my post way too long.  I guess I’m just not good at this unless it’s a short piece, like I did for the 6 sentence post. I guess I’ve been writing in the first person so long I’m a bit rusty on this type of writing.  This does give me great insight into that part of me, something I need to work on.
  • Health tagline – I think most people with blogs have a tagline already, and if not…I wasn’t sure how much more I could do with this prompt.  It felt like a one or two line post.  If you use this prompt again, I think it should have a bit more to it.  Not sure exactly what, but this was missing something….at least for me.

Prompts I liked that I might use again…

  • 6 sentence story…I might do this again, it’s a great jumping off point.  I loved telling a short piece about me that just came out.  I’m glad I did this prompt, I did a happy story, not anything to do with health.  I think we all need a break sometimes.
  • Word Cloud – but I’ll take my own take on it.  I’d rather do a collage I created, and will probably do more of those.

******I would use many of the prompts from the liked or difficult pile again…with some changes, and some from the Bonus Prompts.*****

Bonus Prompts I liked, I used some of these but didn’t use all of them.  (I may use some of these in the future.)

  • Best doctor’s or hospital stay.
  • Happy Place
  • Daily Schedule
  • In a perfect world
  • I keep writing because….
  • personify your health…I liked this because I did a creative approach….that’s the good thing about a lot of these prompts…many you can get inventive with.
  • I Loved the Prompt.–I used to be…but I’m not any more  (this gave me a great outlet, and I shared with many family and friends.  It showed things I can no longer do, but I still was able to put a positive spin on it.)  This was a great first post for the month for me!

I would like to once again thank WEGO Health for this opportunity.  And for all the hard work they have done.  This is only the second HAWMC they have sponsored, and I think they did a wonderful job.   (one suggestion, perhaps you would like to put out a questionnaire for the participants to suggest some prompts, this would give you a greater pool to work from, and would hopefully provide you with lot’s of great ideas!!)

Who was your favorite fellow blogger?

Maureen from Sunshine and Chaos was a constant support to me thought this past month  Encouraging me, and keeping me going, even through the rough spots.

Phylor, from Phylor’s blog was also a great support.  Always encouraging.

I’ve found a couple of new favorite bloggers through this adventure.  Actually they found me first, but I’m glad they did.

Scattered Feathers – she’s a new blogger who really deserves some attention.  Check her out, she’s honest and raw, if you like my style, you’ll love hers.  She has hearing loss, and suffers from mental illness.  Give her your support.

And one more new follower I have been learning a lot from.  Brain Injury Self Rehabilitation  this blog is written by a nurse who was brutally attacked by a patient, this attack caused a brain injury.  She is on a mission to help others realize there are more people out there with Brain Injuries, and Brain disorders – we do not need to suffer alone.  There is hope and help.  She gives sound advise, and encouragement.  If you have a brain disorder or know someone who does, I highly recommend checking out this blog.

there are many more people I could acknowledge, but there simply isn’t room, and they did just ask for one.