How my life has changed….and the straw that made the camel’s back snap.

First, I’m feeling a bit better physically today.  Not as much pain, and not having that weird feeling you get after being sedated.

This is the first time after having this procedure that I do feel like I had surgery.  (I may have mentioned that yesterday.  Forgive me if I did.)

Over the past couple of years my life had changed A LOT!

My biggest health problem went from being my hip, to the Meniere’s.

Almost everything in my life has changed dramatically starting in the winter of 2009.  That’s when the Meniere’s came back full force, and I went bi-lateral.  By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.

It worked, for a while.  By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week.  That’s when I was asked if I’d be interested in the research study.

And if you’ve been following this blog you know the rest.

But just how has all of this changed my life?

  • I wasn’t working when this started because of my hip, but planned to go back to work at least part time.  That isn’t going to happen.
  • I had a little reprieve from my symptoms earlier this year.  For 4 months.  I was almost normal.  I took it for granted, and keep looking for the magic button they pushed to make it better again.
  • I’ve lost a good part of my hearing.  I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
  • I don’t know how to be a friend to my old friends any longer.  We did things, went places, … you know things you do with friends.  I can’t do most of these things now.  Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one.  Restaurants are horrible, Malls…no way, parties are often torture.  Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
  • A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period.  I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue.   And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me.  It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again.  I look back and think…if I had known this would happen, I would have spent that 4 months much differently.  (certainly not spending most of it trying to become foster parents!  That’s not going to happen now…but I didn’t expect to only feel better for 4 months.  So most of that time, we spent wrapped up in trying to be parents.)
  • So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness.  I try hard not to have my illness be my life, but in a big way it is.  I have to think about everything I do….how will it affect me, and my illness.  How much will it take out of me.
  • When I do see my friends I try to look better.  I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch.  Lately, that’s a very big deal.
  • When I was feeling better and driving, and would try to meet my friends, I was scared.  I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me.  But my life was changing so much, that was hard.  And now, my life is static, and it’s even harder.
  • Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate.  So it’s hard.
  • I can’t keep my house as clean as I’d like.  We decided to get cleaners to come in, but that might not happen again….(more about that later).
  • I feel like I really needed some time away from here..away from this house…..just a change of scenery.  I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues.  But we’ve been emailing and texting…so I don’t think it would that big of a deal.  My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues.  But, the trip isn’t going to happen.  (again, more of that later.)

I’ve been feeling like I couldn’t post a lot of things lately.  Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate.  If I’m your friend, I want to be more than that.  And right now, I don’t know how.  I can still listen and try to give advice (if you are willing to “talk” with me by writing.)  But it does seem to take a lot of the personalization out of the situation and I know that’s hard.  I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.

They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do.  I can’t.  And it hurts…down deep inside…that I just can’t.  I don’t fit in.  And I don’t want to be pitied.

Oh, and our house is only 4 years old, and we have to get a new toilet.  For the master bathroom.  They said it would be cheaper than fixing it.  It broke where the tank and the seat are connected.  So one night I went downstairs, and found water everywhere.  So I’m worried about possible mold problems.  I’m being shrugged off about it.  Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs?  We had to move from a rented house once because of mold…I don’t want that to happen with this house.

Another straw landed on this Camel’s back today….I think I heard it snap!

Stuart was told his job will end in one month.  They’ve decided they can’t afford him.  *sigh*

He has an interview tomorrow.  But this breaks my heart.  I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive.  I can’t help.  I can’t do anything to bring in some income.  I really want to do something.

This sucks.

But surely, it will get better from here.

Things have to go up from here.

I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!

Oh heck, we’ve been through a lot, we’ll get through this.

Life is changing again.

Perhaps it’ll be fun.

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13 thoughts on “How my life has changed….and the straw that made the camel’s back snap.

  1. I feel your pain, and the hearing loss is something I deal with too. If I had extra money I would buy a hearing aid but I should look into Meniere’s disease, I hadn’t heard of it before you mentioned it. I would love to “listen” to you on paper or otherwise. I am your friend. love, Laurie

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    • Hi Laurie,

      Anything you want to know, please feel free to ask.
      I have a page at the top of my blog that tells more about what Meniere’s Disease is, and my story with it.
      Meniere’s is considered a rare disease, and I am in the even smaller group who have bi-lateral Meniere’s, most who have it are effected in one ear.
      I’m also in the advanced stages, so it has progressed a long way.

      thank you for coming by.
      I hope you are feeling better, I know you won’t feel a whole lot better until you can have your home back. (notice I did not say house…I know it will take longer than that.)

      remember each day, do something for you!
      love
      wendy

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  2. Perhaps it’s naive or wishful thinking on my part, but could your art be a way of generating income? Like one of a kind cards, or notecards, or labels — all can be produced on printers at home now. Doodles for folks to colo(u)r in (your doodles, scanned and printed on some nice paper, with some crayons or colo(u)red pencils, encouraging/artsy quotes and instructions). Or a calendar, or . . . . where-ever your imagination and your designs might take you? I realize your chronicness makes being an artist harder, but if you were doing something arty which you do so well and perhaps generating some income, I thought you might feel better about things. You’ve probably already explored this or already do this. I jump into people’s lives through their blogs (and lately can’t follow along regularly or backtrack) and offer advice that, if I explored the blogs further, I would either not ask or know the answer to already.
    I am sorry to hear that Stuart’s job is coming to an end; but at least he has an interview lined up (even if it’s not for a good job). Can he get unemployment benefits while he is looking for work elsewhere?
    And, for a great run over by a steamroller, peel off the floor video — fast forward towards the end of “Who Framed Roger Rabbit” (I think the clip is also up on youtube; and you might already be familiar with it).
    Good luck; sending you good thoughts and hopeful vibes.

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    • Thank you Phylor. I have been looking into making my art more than just something private. But I would make so little. And I’m ok with that…at least I’d be contributing. But it will only work if hubby is bringing in the bulk.

      First, I kind of freeze up at the thought of creating art that someone wants to buy. Creating just for me, that’s different. When it moves to me thinking, will this sell? Will others like it? I start to freeze. I really need to get over that

      Don’t feel like you are giving advise you shouldn’t. The encouragement helps. That you think my art is good enough…that means a lot.

      Yes, I know the clip very well. (because of my hearing impairment, I avoid most videos. Closed Captioning is my friend…but that doesn’t really need sound does it?)

      thank you for your support and encouragement. I hurt even less today, and Stuart just left for his interview. (btw, it’s actually for a job he thinks he’d like a lot…at least that’s what he says. He was excited. It doesn’t pay as much, but we could deal with that.) Then I would feel that the little bit I could bring in with my art would help.

      wendy

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      • Wendy, I am the same way you are about your art, only with blogging. Some people (hint, my friend Lorraine) have encouraged me to put my essays together for a book and I automatically freeze and say I am not “good enough.” HOWEVER, I would buy art from you, you need to make it inexpensive enough so people will buy but enough so you make even a small profit. Just think about it. Laurie

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        • Oh Laurie, what a sweet thing to say! You really are a new best friend!

          I’m working on it. I try to do something every day…but this week has been hard. I’ve been journaling a lot, and putting little drawings in it, but not real work.

          However, I started my art again to help with my illness. so any way I can do that…I will! If I happen to find that I can sell a few things, great! but It needs to always be a way to help me heal…(even if it can’t heal my body, it helps heal my mind.)

          xo w

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          • I love doodling and brought supplies here but haven’t done it yet, first I have to find all the supplies. when i do it it is very soothing and I enjoy it (though have no talent). Maybe my goal this weekend will be to find my pencils/paper!!!

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  3. Just wanted to say, “hello” and that I am happy that I found your blog…although certainly not happy that we have vertigo/chronic illness in common. I struggle with a bilateral vestibular disorder (that has been diagnosed as various things throughout the years). I’m interested to read about your experience with the spinal fluid treatments. Anyway, thanks for blogging. I’ve started a blog here as well (takinglifeforaspin.wordpress.com).

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  4. Oh, I wish I could say something to make you guys feel better. Hope the interview goes well for Stuart.

    I agree with what Phylor said, that’s what sites like Cafe Press and Zazzle are for. I have to say, I thought the same idea about you.

    Friendships can sometimes be so uncertain. The people I knew before I got sick fall into two groups. People that I thought would be long-time friends and people that I thought would be friends for a certain part of my life. The people in the second group doesn’t bother me. I know certain people will go in and out of our lives. But it’s the ones in the first group that I thought would be there for me. I know a lot of them are dealing with what life throws at everyone plus their own personal stresses. But, it still sometimes hurts to know that they thought my illness wasn’t as serious as it is or that they didn’t believe me because doctors hadn’t found a diagnosis at the time. OK, let’s get away from the friends thing for now.

    Life is changing is a perfect way to put it because that’s what life does, change. As the saying goes, “This too shall pass.” I hope this change brings many wonderful opportunities for you and Stuart.

    Maureen

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  5. Wendy,

    I agree 1000% with the suggestion to start selling some of your art. I imagine it can lead to a creative block when you start thinking “marketability” as you create, but if you can somehow psych yourself up that you are still only creating for yourself… You are very talented and your work is beautiful. What about dabbling in illustrating? Not the same?

    A friend told my husband a story this week that is along these same lines. He is a self-employed web designer/producer of small video clips & local commercials who manages to eek out a small living but who is passionate about his work. He said recently someone told him he should charge more. So last week when he had the opportunity to bid on a web project for a very large company, he quoted them $15,000 on a project that usually he’d bid to do for $3000. After a little negotiating he got the contract and is getting paid $13,000 for the job AND can now list this company on his portfolio (or whatever they call it). Awesome!

    My point is valuing yourself, your skills, and your talent. You are worth what you think you are worth (which IMHO is a lot, my friend!) and people will think their purchase is all the more special if they pay more for it. Art especially seems to have that effect on people! Have you seen what abstracts go for? Lol!

    I really hope Stuart gets this job. Wouldn’t it be crazy if in the end he gets a job that he loves and (eventually) makes more money doing. Ok, the money would be the icing on the cake.

    We’ve had this friendship conversation before. The emotional pain of watching everyone go on with their lives without you just compounds the physical pain you have to endure. Chronic disease and disability is more than the physical, isn’t it? In fact, the physical sometimes feels like only a small part of the burden.

    On that note, here’s to the weekend… I hope it’s a beautiful Fall day there like it is here and that you will find at least some way to take pleasure in the small things! And maybe even some medium or BIG things, too!!

    Angelea

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  6. Apologies if this info posts twice but it looks like I lost my first comment. So, to recap:

    I agree with Angelea about valuing your work. So many people undervalue what they do.

    Also, have you considered selling some of your art through local business. I’ve been in many places (restaurants, bakeries, coffee shops) that support local artists buy having their artwork on their walls. It’s a win-win situation for both because it’s another way for artists to get exposure and the company probably getting some sort of commission for having art on their walls. And, they don’t have to buy art. These smaller businesses always have something on their walls, right?

    Also, I saw this today, it may be an option depending on how the deal is and how you feel about ads on your sites. http://www.inc.com/tech-blog/wordpress-bloggers-to-get-advertising-support-.html

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