Good Days, Wonky Days, and Great News

What shall I start with…  How about the GREAT NEWS!

Stuart accepted a job yesterday.  He had two companies make offers and it was hard to choose between them, but he chose the job that allows him to telecommute.  I believe his title is Senior Software Engineer at MEDSEEK.  (he’s been working with the medical industry for a long time and enjoys it.  Hopefully, he will be very happy in this new position.)  We’re excited!  He starts on the 23rd.

Also good news, Stuart’s sister had her second child today….well technically yesterday.  He will be sharing the same birthday as my sister.  (I hope that doesn’t jinx him, at least I’ll never forget it!)  His name is Johnathan David…after his grandfathers.  Looking forward to pictures.

I’ve had some good days, today was a pretty decent day.  We got out of the house, and went grocery shopping.  Yes, I was excited about that!  I cooked a great meal a couple of nights ago, and am looking forward to cooking more often.

However, I’ve had some Wonky Slosh Head days too.  The 11th…not a good day.  It was overcast or raining all day, and my head felt like it was full of goop, and my brain was sloshing around inside of it.  For the first time in weeks, I felt I needed help walking.

Today, I had the strangest tinnitus.  I always have some sounds, and at times they can get pretty obnoxious and just odd, but this time I could feel it.  What comes to mind is the poem, “I heard a Fly Buzz” by Emily Dickinson, luckily I wasn’t dying.  However, I could also feel the thing in my ear.  The vibration was so annoying…and dang it all…strange.  I sincerely hope I do not have that sensation again.

My hearing, is also strange.  The ear I had operated on in December had 0% word recognition in November.  Now it’s fluctuating, a lot!  Sometimes I hear nothing out of that ear, sometimes I can hear Stuart talking when I don’t have my hearing aid in the other ear.  And I promise I’m not hearing out of that ear!  Speaking of that ear, I think my hearing is dropping and/or simply getting more distorted.

the sign for ASL (American Sign Language) - photo from Lee Clarion University where ASL counts as a Foreign Language Credit

I’m so happy we are starting our ASL classes in 2 weeks.  I really need a back-up way to communicate.

I have a question, for those of you with Meniere’s.  How many of you were told you would have “burn out”?  I learned today, from a hearing loss specialist, that they no longer believe burn out happens.  I’m involved in an email group from The Say What Club (SWC), they have a few groups for people who are Deaf or Hard of Hearing.  I’m a member of the Meniere’s Group.  Everyone on there has some pretty profound hearing loss.  I’ve found that a few on the board are a bit older than I am.  I know one man is 76.  No one has experience “burn out”.  Only one member has no vertigo any longer, and he had Streptomycin injections, so he had no balance center.

On another note, there are a few on there who have Cochlear Implants, and love them, they say they are they are much clearer than hearing aids!  I’m beginning to look forward to the time when I can get one.  Then I think, I may just want to embrace the deaf world.  I’ve been pretty conflicted.  Then I thought, why do I have to choose?  I think I’ll probably do a bit of both.  If I can get a CI, I probably will.  But I want to know ASL and be involved in the deaf community too.  You never know when technology may fail.

Coming soon…learn all about a different part of my life.  Bipolar I Disorder and Me.

 

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13 thoughts on “Good Days, Wonky Days, and Great News

    • I hope so! But I know it’s a real possibility that I will have this to some degree for ever. As long as I can keep my balance most of the time, I’ll be happy. Even if I have to use a walker, I’m ok with that, but sometimes, I can’t even keep that going straight….yep…looks like a Drunk Woman With Walker!

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  1. This is exciting news, Wendy. I’ve been wondering how you’ve been doing. I’m so glad to hear you have been out of the house.

    I took four semesters of ASL and a deaf culture class. I am a speech language pathologist by profession, so have a lot of audiology in my background. 🙂 I had to know all about hearing aids and performed tests on people and used an otoscope ect in grad school. In undergrad, I worked under a prof that was doing research with children with cochlear implants. The studies have always shown them to be the most successful in adults as opposed to children who have never heard (deaf from birth). It is a great option to consider if you end up there. With technology these days, you don’t have to choose between the deaf and hearing world. Heck, my ASL classes were taught by a completely deaf individual (late 90s) and even then he was saying how much technology is making it easier for deaf people to interact with the hearing world. Programs that I would use for people who cannot speak I’m sure could be used for those who are deaf. Sorry, the speech lanugage pathologist in me is rambling on!

    I have taught George a lot of ASL. Most of it is for when I can’t tolerate sound with a Migraine. Also, you don’t know, but I have been having attacks for about 15 months where I have periods where I cannot formulate words/talk (I don’t know if you are a member of my Carepage or read my latest update there.). So I try to sign (incoherently) which works better than the jargon I get out. he knows a lot of the basic signs–no syntax though. He has such a bad memory, but he tries his best.

    Anyhow…I’m rambling.

    One question. What is “burn out?” I’ve not heard of it.

    Hugs

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    • Kelly, Everything you said, while speaking as the speech language pathologist, was very interesting. Feel free to ramble on.

      I’ve heard many say that Meniere’s will “burn out”, (my first ENT told me) that eventually the hearing will go, and the vertigo will stop. (big thing, vertigo stops.) Some people said their doctors told them that all the symptoms would at least dramatically decrease. However, from reading more and more studies, and listening to those who have had this for 40+ years. It never goes away. It fluctuates, just like always, where you could sometimes go for long periods without an attack, then have a bunch for a while…..ect. ect….

      I admit, I was hoping that I was getting to the point I was going to “burn out” soon. Yes, lose my hearing, but lose the vertigo too! Now it sounds like, I’ll probably lose my hearing (or most of it), but I’ll always have the chance of a vertigo attack. However, since having the surgery the vertigo has diminished a lot. I still have feelings like I’m walking on a boat, and when I turn fast or bend over the world moves…but I feel like I shouldn’t complain about these things. I’m not completely incapacitated any longer, I will learn to live with what I have to. But I’m thrilled that most days I can get out of bed now, even with my headaches, most days I can at least go downstairs. Brush my teeth, clean up a bit… Now what keeps me in the bed the most are debilitating headaches. If we could do something about that…I’d be a much happier person. (and I know you would too.)

      How’s the vertigo for you since the surgery?

      love and hugs, wendy

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  2. I hadn’t heard of burn out in regards to illness of any kind, actually. I’m glad you’re having more good days than bad with the vertigo. 🙂

    I agree–if you could try the CI, go for it. But also learn ASL. Perfect plan, I think.

    I’m still praying you’ll be rid of the vertigo altogether or, at the least, almost completely rid of it. 😉

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  3. This is great and interesting news for both you and for Stuart, too. I am particularly interested in the illustration of children’s books. We have some great ideas, but neither of us have the pariticular talent to draw, but have the words. When I “wrote” (cut and pasted pictures, stickers, and letting them do the work through imagination). In big letters on one page: Meghan likes to climb trees — on the facing page: just the words: draw the kind of tree Meghan would like to climb, so Meghan had to add her own self and tree. A friend, a prize winning poet, has been working with an illustator friend to add pictures to his amazing poetry!.
    On your “going dark” on January 15: I put it in my google alet spot, so it will wake to the reminder. What a great idea, and sounds like its more than time something was done abou thisl Have to run; tired so it will be more a walk. I’ll “try” to “talk” agan later about ALL your good news!
    Congratulations!!!!!
    Accidently put this on another blog, asked the blog owner to delete from her blog if she could.

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    • a PS: the unique, individualized books were for my grandneices and grandnephew. And, I did manage to get my signature, eventually added to the e-petition. Have a good alert to remind me not blog (have dr.’s appointment same day so should help me remember! And, my poet friend is working with an award-winning, well known in the area artist — I can’t wait to see the results.
      Looking forward to seeing your illustrations for the books!
      And good luck to Stuart with his new job!
      Congrats — already looks like 2012 might be a special, positive year for you.Yeah you (and Stuart) certainly deserve one or more!

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      • Phylor, I made 2 different children’s books in college for a class…it was fun, one I even thought about sending off to see about getting it published..but can you believe someone stole it? It was about teaching kids about reduce, reuse, recycle….in a counting book. (that was in the early 90’s so it wasn’t focused on as much as it is now, probably done to death now.) The other was about shapes, and it has houses in it and you could take the top and bottom of the houses and make them a different house. (the pages were cut in half so you could make new pages.) It was cute, but I don’t think it was publication worthy.

        The children’s book my friend wants me to work on is about Music Theory. She says all the books about it are boring and often way over children’s heads…she wants to make it fun. We’ll see how it goes. She too has a chronic illness that rules her life, so …. we’ll see.

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  4. Ah, its all about those few good days isnt it, sort of makes the horrible ones worth it i guess 😀 and you went grocery shopping YAY !!
    Huge congrats about the job too, sounds great and another thing to look forward to!
    keep up your amazing good work, and i am so proud you decided to speak up about bipolar disorder, you are wonderful ! xxxx

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    • you are so sweet. I’m working on the bipolar blog post. It’s hard to know just what to put in and what to leave out. Sometimes I ramble as you know. : )

      Don’t know if the good days make the bad days worth it…but the bad days sure do make me appreciate the good days more than I ever thought I could! Excited about grocery shopping…who would have thought?

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  5. Great news is the perfect way to start a post!

    I still get excited when I have to do something that requires getting in a car, even if it’s errands. I have to take some rolled money to the bank. I go to a particular branch so that if I feel like it, I can wander the stores that are in the same block. It’s one of those parts of town that has a 2 or 3 block area of little stores and there’s always a few that I love going into.

    I don’t think I ever heard my mom talk about burn out. But, then again, I don’t remember her losing much of her hearing either. See, non-typical ear disorders run in the family. Or at the very least, started with my mom.

    How long do you have to wait until you can get a CI? It seems like the CI and ASL could compliment each other nicely.

    2012 has started off wonderfully for you and Stuart. Here’s to more of the same for you this year.

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    • I love those places that have blocks of little shops. We have one little area in Durham, I used to love to go to, but many of the shops are gone now. I still like some…the local book store, the homemade gelato shop, a funky little hippie store… but now it has a tatoo parlor, and too many empty stores. Plus my favorite restaurant closed. *boo* Stuart and I went on one of our first dates just walking that street, going in the shops, and having lunch and frozen gelato (an Italian ice cream). It was a perfect day.

      about the CI, my hearing has to be below 60% word recognition, from what I understand. I haven’t asked our insurance specifically, and since we’ll have new insurance soon…who knows. But this is what many on the Say What Club board have told me. This is medicare’s rule, so I’d think it’s be close to the same for private insurance. At last check, I was 0% word recog. in left ear and 84% in right ear. (I think…or 86??? some where in there.) The trick is to take the test on a bad day, when my hearing in my right ear has fluctuated down. : ) Or lie…but that’s just so hard for me to do.

      I do hope our year turns out to be better than the last half of last year! so far.

      good days to you w

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