Wednesday, October 2, 2013

Setbacks

The euphoria of the 2nd CI began to fade a couple of weeks after I left the mountains and returned to Richmond where I have much less control over my auditory environment.  The left CI, or what I assumed to be the left CI has been bothering me greatly again for the past 3 weeks or so.  I have found myself clicking it off when feeling overwhelmed by sound, which is happening more and more.  Library printer?  Off.  Video games?  Off.  Loud TV?  Off.  Starbucks machinery?  Off.  Overly loud voices in the library? (there goes that mouth again)... Off.

Not good.

The last time I saw my audiologist, he mapped the left CI at 4 volumes, with 4 being the highest and 1 being the lowest.  I left his office with it at 4 and it sounded pretty good and very manageable.  Within the last couple of weeks I have dropped it down to 1.  Then I tried it back up at 2 and couldn't even take that.  So back to 1.

Very frustrating.

I saw my audiologist again today and he checked the levels in my left CI (which, by the way, is the one I got implanted first) and it is even worse than I thought.  I am hearing less with it than I was this time last year. I've lost about 20 decibel levels, you can see what I mean below.  This makes me very sad. :(
My audiologist said that the constant flicking it off is contributing to this, although he assured me this is not uncommon in adults with long-term hearing loss after their 2nd CI.  He said he would estimate about 60% of adults like me find themselves taking off one CI or the other after a bilateral implant, but he said eventually about 95% come back to using them both.  He says it is partly because the brain is now adjusting to auditory input from both sides. 

He also said that when I am around these noises that I find so difficult to deal with, to put some distance there, if possible.  Get away from the library printer.  Get away from the video game noise. Or at least move so I am not in such close proximity to the sounds.  He said I can even turn the volume in the left CI down when around those noises. 

He told me that the goal for now is to keep me wearing it and to stop me from turning it off and then we can work our way back up.  He remapped it with one setting only and I am to use the volume buttons on the remote to go up or down as needed.  He hopes that by the time he sees me again, I will be using the up button more.

He didn't change anything about the right CI (the one I got activated in August).  He wants to leave it where it is while we work on the left one.

I'm tired.

Tuesday, September 3, 2013

46 Things

I meant to create a list called "45 Things to Do Before I Turn 45", but, well, I'm a slacker and now my 45th birthday is only 8 months away and there are things I want on my list that will not be accomplished in that time frame.

So now it is either "46 Things to Do Before I Turn 46" or "45 Things to Do Before the End of My 45th Year."

So here goes.
  1. Walk 1,000 miles.  Not, obviously, all at once.
  2. Get down to a healthy weight.
  3. Participate in another 10K.  Better yet, a half-marathon.
  4. Read the complete works of William Shakespeare.
  5. Read the Iliad and the Odyssey.
  6. In addition to the above, read another 25 works of classic literature.
  7. Go on 3 hikes with a trail club.
  8. Take a train ride somewhere.
  9. Go to Washington DC and visit the National Mall.  I haven't been there since college.
  10. Take a plane ride somewhere, anywhere.  I am terrified to fly, have only flown once (round-trip) and would love to prove to myself I can do it again.
  11. Finish 2 more classes towards my Deaf Education certification.
  12. Take piano lessons.  Or guitar lessons.
  13. Start CrossFit again.
  14. Do unscaled Toes to Bar and burpees.  And one unassisted pull-up.
  15. Do the Memorial Day Murph.
  16. Do Barbells for Boobs.
  17. Do 31 Heroes.
  18. Pay off at least 2 credit cards.
  19. Write a poem. 
  20. Go to Chicago.
  21. Paint a picture.
  22. Illustrate one of the children's books that I have written.
  23. Write a novel.
  24. Do one random act of kindness a week.
  25. Volunteer.  Somewhere.
  26. Find a regular AA meeting.
  27. Get my nose pierced again.
  28. Take a pottery class.
  29. Take a beading class again.
  30. Draw a picture of someone I love (Benedict Cumberbatch does not count).
  31. Finish the Relay for Life scrapbook for my mom.
  32. Grow sunflowers in a giant pot.
  33. Build a really big snowman.
  34. Have a conversation with someone without reading their lips.
  35. Blog once a week.
  36. Establish a skin care routine.
  37. Do 10 minutes of yoga/meditation before bed at least 5 nights a week.
  38. Go out on a date.
  39. Go to Busch Gardens.
  40. Go through all the boxes I have in storage and get rid of anything I don't need.
  41. Don't eat fast food (unless it is a salad) for 6 months.
  42. Finish the activities in the Dialectic Behavior Therapy workbook and/or the Cognitive Behavior Therapy workbook and APPLY THEM.
  43. Go to Hampton and catch up with all of my old friends.
  44. Make my own tie-dye shirt.
  45. Go parasailing in Nags Head.
  46. Catch a meteor shower.
Looks like it is 46 Things to Do Before I Turn 46.

Let's go!

Thursday, July 18, 2013

Second Cochlear Implant

I know a lot of you thought :start southern dialect: I done lost my mind :end southern dialect: when I made the decision to get a second cochlear implant.  For over a year since the first CI was activated, I had a completely miserable time.  I had at least two major depressions during the adjustment period, one of which was so severe that I wasn't sure I would make it out alive.  Did I really want to go through that again?  Really?  Really, really??  Who but a crazy person would want to do that?  Erm.  Ummmm.

Here is why I decided to do it anyway.

1.  My goals, especially better understanding of human speech without needing to read lips, are nowhere close to being met, and research shows that two CI's are always more beneficial than one.

2.  I'm better prepared for what I will be facing after the implant is activated.  Nothing, I mean nothing, prepared me for what it would be like after the first one.

3.  The second CI is in my right ear, which is my "good" ear.  Some of you may remember me having to decide which ear to implant.  It was a bigger decision than most people realize.  If a person has a less severe hearing loss in one ear, that ear will almost always do better with a cochlear implant.

Here's a hearing loss lesson for you, starring me (and the hearing banana)- 

The loss in my left ear is in the profound range.  That is one step up from completely deaf.  See the chart below and let me introduce you to the magnificence of the hearing banana!  :applause:



It shows what sounds you may be able to hear at what level of loss.  My left ear's loss is in the profound range.  It is close to the very bottom of the decibel chart.  In fact, the only thing I can "hear" in my left ear (besides certain beeps being fed to that ear via an audiologist's sound machine) is incredibly loud music, and even then only if I am right next to the source, like a huge speaker and my ear is practically pressed against it.  

In fact, the first time I ever heard anything in my left ear, outside of the audiologist's booth, was at a bar.  I was about 22 years old.  I was sitting right next to an amp for a live band.  It didn't even register as a real, recognizable sound, but as a high-pitched tingling sensation.  

I was so excited, though, because it was about 18 years after my hearing loss occurred and I had never registered any sound in that ear before in the real world.  I was hoping that my hearing was coming back!  Nope.  I guess I had just never been in that situation before.  

All those loud, drunken fraternity parties at JMU and no awareness of sound in my left ear.  Huh.

Anyway, this is why I have never worn a hearing aid in my left ear.  The loss is too profound for a hearing aid to be beneficial.  

Moving on to the other ear.

My right ear is in the severe-profound range.  Without a hearing aid, there are some noises in the severe range that register with me, but most don't, and some sounds in the profound range I can hear, but many I cannot.  You see above that pianos and telephone rings are noises that people with a severe hearing loss may hear.  I can't hear those.  

In fact, the only sounds that I can consistently hear without my hearing aid are big, deep sounds like thunder and trains, and even then it depends on my proximity to the sound.

That is how quiet my world is without auditory amplification.  Which, I won't lie, can be kinda nice sometimes.

I've always had to have the most powerful hearing aid on the market.  The last one I had was called the "Sumo."

Sumo image from The Sporting Life.

Nevertheless, a hearing aid was greatly beneficial to me.  It put me somewhere in the mild-moderate range.  I can hear most sounds illustrated in the glorious hearing banana in those ranges.  Recognizing these sounds without a visual cue, however, that's a whole 'nother cup of soup.  

I hear much, much, much more than I recognize.  That is what so many hearing people fail to grasp.  How, for a deaf person using amplification devices, hearing sounds is so much easier than recognizing sounds.

Soooo, there you have it.  My left ear is my "bad" ear, and my right ear is my "good" ear.  A cochlear implant performed on an ear that had some access to sound before the implant will give better results than one performed on an ear with less or no access to sound.  Ergo, a cochlear implant in my right ear should be more successful.

At this point you might be wanting to slap me upside the head and ask me, "Why didn't you choose the right ear in the first place, you moron?!?"  Welllll, with CI surgery, you risk losing your residual hearing!  I was too scared to risk losing what hearing I did have on the chance that the surgery was not successful.

This time the good ear is done.  Because my brain has been receiving sound from that auditory nerve for 40 years, especially with a hearing aid, it is more likely to adapt well to the auditory input from the cochlear implant.

Why get CI surgery at all?  If my hearing aid is the hearing aid equivalent of a sumo wrestler, cochlear implants are like, well, King Kong.  Or a T-rex.  I'll go with King Kong.  Don't you think that T-rexes look kind of silly with those little, dangling arms?

Wednesday, January 30, 2013

Progress

Good grief.  Has it really been since October since I blogged?

Actually, that is not too surprising.  I think those of you who know me are aware that October and November were two of the darkest months I have ever suffered through while battling depression.  Most of 2012 was like that, actually.  I didn't much feel like writing.  Heck, I didn't much feel like getting out of bed.  Then sometime around the end of November, I started climbing out of the abyss.  It wasn't really through anything I did, although I was pushed (forced really) into getting help and I started talking to a new therapist in December and started seeing a new psychiatrist in January.  More though, it was that things just eased around the end of November.  It never feels like things will ease when I'm in the midst of it.  It is hard to describe to someone who has never been through it the complete loss of hope and the utter dominance of despair.

I used to think, as many people do, what a selfish act suicide is.  Now I understand.  I even defend people who do it, people who can't defend themselves anymore because they have passed on.  May no one misunderstand me and think I mean that suicide is a valid answer.  I don't believe it is.  But I've been there several times now and each time it has seemed to me as the only answer to the pain and I understand now the bleakness, the desperation that would drive someone to do it.  I can say with complete honesty that if I did not have the support system I have tethering me to life even when I most want to escape it, I don't think that I would be here.

This last time, my Aunt Joanne - one of those "aunts" who is a lifelong family friend rather than an actual blood relative - read between the lines of my Facebook posts and started an intervention from all the way in Roanoke.  Between she, my mom, and my sister, I was pushed into getting help that I didn't really want to get at the time because it seemed pointless, and I was so tired.  The tiredness that comes with depression is an entity into itself.  So thank you, Aunt Joanne, Mom and Kelly for not letting me give up.

I am working with a new psychiatrist.  She says she doesn't want to label me "Bipolar" or "Bipolar II" or what have you, but that I do definitely have a mood disorder.  She is focused on finding a different mood stabilizer, because she thinks that will be more key than the antidepressant.  I could tell she was surprised, although she was very professional about it,  that the psychiatrist with whom I used to work had only tried me on two mood stabilizers in the 7 years since he reached the "Bipolar II" diagnosis.  His focus was much more on the antidepressant.

So, my new doctor is slowing getting a new mood stabilizer into my system and slowly weaning me off the old one.  I cannot tell you how excited I am because I have had a very significant weight gain since going on Seroquel and my doctor thinks it is absolutely correlated with the medication.  Seroquel can not only directly impact a weight gain, but also can cause symptoms of false hunger so you feel hungry much more frequently than you should.  If this isn't bad enough for someone who already struggles with her weight, Seroquel also causes fatigue, so working on the weight issue is even more difficult because I am so freaking tired all of the time.  I seriously can sleep 11-12 hours a night and still feel like I need more.  So I am very, very excited to be getting this stuff out of my system over the next month or two and hopefully regaining some energy and being able to refocus on losing some weight because I am not healthy at all right now.

On another bright note, I am finally enjoying my cochlear implant again and I have not even been wearing my hearing aid these last few days.  Not wearing my hearing aid is huge.  Huge!  I still have a looong way to go, but I am wanting to work on it instead of wanting to yank it out and grind it up in the garbage disposal.

So that's it for now.  Thanks for reading my blog!