Little Packets of Overprocessed Food

So, let's talk about what I am going to do for the next 2 - 3 months.  You ready? It involves little packets of over-processed food, so it is sure to be scintillating.

Most of you who have known me a while know that I suffer from major depression. I would guess I have averaged one major depression a year since my mid-twenties.

I can't pick out any one thing about major depression as being the worst part, because every facet of it sucks elephant balls (sorry, Mom), but the weight gain, man, the weight gain has been horrible.

There are people who stop eating when they are depressed. There are people who overeat when they are depressed.  There are people who stuff their faces until they reach food comas when they are depressed.

Guess which one I am?

Over the years, I have ballooned up rather like Aunt Marge in Harry Potter.

The good news is I have lost quite a bit of weight since August. I stalled in March, though, and am trying to jump-start the process again.

Here is where the little packets of overprocessed food come in, which is going to horrify my CrossFit/Paleo friends, but the situation is dire.

I've tried the Medifast diet a few times.  It's hard to stick to and not very tasty so I haven't been all that successful with it.  Hence, I've accumulated a lot of Medifast food the way I've accumulated extra pounds. I probably have 2 - 3 months worth sitting in boxes at home.

That's several hundred dollars worth. More, really. I can't sell it, because, well, it is kind of expired. Not so expired that it is unsafe for me to eat it.  The additives and preservatives in these packets would probably keep Medifast food edible through years of Armageddon. But expired enough that I can't sell it on eBay.

So there is only one thing left to do, right?

Eat it.

I'm not wasting that much money and I WILL lose weight on it, but I am just telling you that I reserve the right to whine like a colicky baby in the meantime.

I'm also blogging about it to force myself to do it and give myself a degree of accountability.

Yum.

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.

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!

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:

Image from : Listening and Spoken Language

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?

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!

Not Quite Normal

Audiology appointment today.  First time in months.  Not what I expected.  I thought the CI levels would be "turned up," but -

Okay, this might need a tutorial.  See I have a remote that goes with the CI. A currently missing remote which I hope I tucked into a drawer at work and just overlooked Friday while searching for it because I turned my room and both cars inside out and cannot.find.it.

By the way, my sister would NEVER lose a remote this important.  Ever.  I wish that I had one-tenth her ability to be organized.

Come to think of it, my brother probably wouldn't lose it either.  Now.  He might have in high school, though.

Whoops.  Jumped track there.  So on this remote are different levels and situations that my CI can be tuned to, all with the push of the button.  Back in September when I was feeling like things were not loud enough (and knew where my remote was!), I actually switched it to setting 3, which was the highest of the settings available at that time.

Turns out setting 3 is pretty dang near normal hearing levels.

When GOA tested me today, I was hearing lower frequencies within the range that someone with "normal hearing" would.  Higher frequencies are peskier especially for me since my hearing loss is much worse in the higher frequencies, and he did turn up those just a smidge, but he didn't mess with the lower frequencies.

Nevertheless, what I really need, he said, is just more time.  And time.  And time.

Don't get too excited about these "normal hearing levels."  That just means I can distinguish the presence of a sound at decibel levels that a person with normal hearing can detect, it does NOT mean I am understanding sounds or voices like a hearing person is able to.  I'm not even close to that.  Read on for a better idea what I mean.

BTW, speech reading = lip reading.  I grew up using "lip reading," but as I learned in my deaf ed classes and by working with GOA, the term has shifted to "speech reading" to give a better idea of the depth involved because it is really not just lips that are being read, but many aspects of the face.

Anyway.

GOA tested me with very random sentences.  I mean these things were R.A.N.D.O.M. One might be something like, "Her sister struggled with anorexia", and the next one might be "How dare you think I am a spineless wimp!"  Yeah.  Like that.

He read about 15 or 20 of these suckers under 4 conditions (and the sentences changed with each condition; they were not repeated).  First was CI only (no speech reading).  Second was CI and hearing aid (no speech reading).  Third was CI, hearing aid AND speech reading.  Fourth was speech reading only (no sound).

With CI only, I understood 5%.

With CI and hearing aid, I understood 11%.

With CI, hearing aid and speech reading, I understood 97%!

With speech reading only, I understood about 32%.

You gotta keep in mind, too, that words like "I" and "You" counted.  They probably made up 1/2 of what I understood with the CI and hearing aid.  So that is pretty low, but I guess it might help people understand what is going on with my brain.  You also gotta consider that this was a controlled test.  You put me in the outside world, with all that background noise, and all the numbers will drop.

So I have a long, long way to go.  It is pretty exciting though, when these random noises coalesce into recognizable words without the advantage of speech reading.  It's not happening a lot, but it happened 3 times on Friday.  Yep, I counted.

I don't really know how I am feeling today.  Tired.  GOA mentioned how much energy it takes for people going through this to "hear".  It really, really does.  I'm tired.  I'm still struggling mentally, but I don't really want to talk about that today.  My last entry was like a mental vomit.  I don't want to go there right now.

Round and Round

Hard to believe that just about a week or so ago, I was marveling at eggshells plinking into a trashcan.  I want to be that Carolyn again.  I hate being this Carolyn.  This is what bipolar is like, folks.  Going from joy to despair in a matter of days.  Sometimes a matter of hours.

I was trying to think of a way to describe "this Carolyn" and when "down in the dumps" popped into my mind, it made me think about what a disservice descriptions like that do to people who suffer from bipolar disorder or major depression, as if there is a deliberate wallowing going on.

There's very much a "pick yourself up by your bootstraps" mentality that many people have towards these illnesses, which is as ludicrous as telling a cancer patient to take an aspirin and get a good night's sleep.  I'm not making light of cancer here, lest you take it that way.  I lost my grandmother to cancer.  I lost one of my best friends to cancer.  My mom is lucky to be a breast cancer survivor, but several of my good friends have lost their mothers to cancer.  I would never, ever make light of cancer.  Instead I'm just despairing of the cavalier attitude and ignorance, oh, so much ignorance, that many people have about mental issues.

I read an article not too long ago (sometime in the last year anyway) and I wish I could find it to link to it.  This woman had suffered from bipolar disorder for decades and she said, "It's not that I won't be happy or don't want to be happy, it's that I CAN'T be happy.  My brain isn't wired that way."  I read it and was like, "Yes. This."  

I actually felt a feeling of relief that someone out there was able to put it into words.  I want to be happy.  Doesn't everyone?  But it feels like most days it is a struggle for me to even be functioning. The wiring in my brain is screwed up.  We don't know how or why.  It does not run in my family.  We have speculated before that maybe having meningitis could have altered my brain chemistry to that extent.  Little research has been done about a possible correlation although I did uncover research that links CNS (central nervous system) infections in childhood to a slightly increased risk of schizophrenia in adulthood.  If that is the case, I wouldn't imagine it would be a big leap to bipolar.

All I really know is that it is a terrible way to live.  I have bipolar II which is a "softer" version.  Lucky me.  All that means is I don't have true manic phases, but instead I have hypomania which can manifest in many ways.  For me it is usually anger, racing negative thoughts, fear and anxiety.  The depressions, though, there is nothing softer about the depressions.  They are soul-suckers.

Women with bipolar II are more likely to have substance abuse issues than the average woman.  Yep.  Women with bipolar II are more likely to have weight issues and obesity than the average woman.  Check.  It's the self-medicating.  For years it was alcohol.  When I got sober, it became food.

It often takes years for bipolar II to be correctly diagnosed because it often manifests more as major depression, so psychiatrists are more likely to treat it with anti-depressants and anti-depressants often make bipolar II worse.  So years to get diagnosed and sometimes years to get the medications worked out, if you ever do.  

And the side effects from the medication are often horrendous.  Many days I feel like a barely functioning zombie.  I'm so tired all the freaking time.  At the same time I'm angry.  It's a weird combination as anger implies some sort of negative energy, whereas fatigue implies no energy at all.  

My anger usually turns inward and I want to self-harm.  I used to be a cutter.  I shouldn't say used to be, really, as it has only been a few months and I fight the urge frequently.  I know how crazy that sounds to almost all of you, but the best way I can describe it is that it is an external release of internal pain.

I'm scared.  Looking back over the last few years, it feels like my depressions are increasing in frequency and strength.  For each major depression you have, the odds of having another increase.  By the time you have as many as I have had you are just about doomed to have more.  Your neural pathways are, pardon my language, fucked.

I remember talking to my psychiatrist in early June.  I had a depression from about February to the end of June.  He said, "You are going to get through this.  You always do."  I replied, "Yes, and then another one will come along."  He didn't know what to say to that.  It's a horrible feeling to speak that awful truth and have your doctor not even know how to reply.  He knew I was right so really, what could he say?  I will likely have another and another and another until I die.

Don't look at me differently for this.  Don't treat me differently.  If you see me at work or at the gym, don't look at me with pity.  But don't judge me either.  Please.  I'm doing the best I can.