On Meniere’s

Ménière’s disease /mnˈjɛərz/,[1] also called endolymphatic hydrops, is a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo, tinnitus, and hearing loss. The hearing loss comes and goes for some time, alternating between ears, then becomes permanent with no return to normal function. It is named after the French physician Prosper Ménière, who, in an article published in 1861, first reported that vertigo was caused by inner ear disorders.[2] The condition affects people differently; it can range in intensity from being a mild annoyance to a lifelong condition.[3]
-From Wikipedia

I had an idea to do a 24 hour stream at some point during the summer for charity. I wanted to do it for something that most people aren’t aware of, is chronic and doesn’t have a cure. Meniere’s disease fit the bill and it’s something that I suffer from. Unfortunately it looks like there are no legitimate charities, patient support, or research organizations that focus on this disease.

It’s an exclusionary diagnosis. This means that people who are classified under this disease don’t have all the same symptoms, don’t have all the same triggers, and ultimately end up making drastic lifestyle changes to manage symptoms or simply get through the day. I’m lucky that my episode ended on a relatively good note. I deeply wish that there was some way for me to help others who are soldiering on.

Lately on the subreddit there’s not been a lot of chatter but something that’s been getting a lot of activity is a post about physician assisted suicide. Unless you’ve suffered through prolonged bedrest or similar situations you don’t really understand how helpless and useless you feel. Imagine feeling a little dizzy when you go to bed and then the next morning you can’t get up. Can’t see straight. Can’t even move without the world tumbling around you. Puking until there is nothing and then puking more. Learning to eat while lying down because you don’t want to scare your husband by not trying to eat. Feeling like a failure to your child because you miss them walking for the first time and your milk dries up because your body doesn’t have enough fluids anymore. I won’t lie and say I didn’t think about suicide. If my initial episode had gone on for a few more weeks it might have been a viable option for me.

I’ve always been a naturally depressive person and have always had a certain amount of anxiety. I think post-meniere’s it has kicked up to 11. Every outing is a potential trigger. Every time I physically pick up my children it goes through my head as a potential disaster. I wonder now if my Dad had meniere’s (there’s not been a clear link genetically) but I remember him holding on to the walls in the hallway of our home to walk to his bedroom and my mom complaining about the hand prints. I guess I don’t have anyone else to blame for the multitude of hand prints on my walls, I can certainly see the ones that have saved me from falling throughout the day. Of which there are many.

Some other symptoms are ephasia (a loss of words), congnitive issues, and (of course) hearing loss. All of which add to the overall stress and anxiety levels along with an absolute lack of control.

So why the heck isn’t anyone aware of meniere’s or other vestibular diseases? Why isn’t there a meniere’s day? A ribbon color? A charity to rally behind?


Low Carb Lows

Before and after pictures would be pretty pointless at this point. I didn’t anticipate a lot of what’s happened this month. I certainly thought I would’ve lost more than 11lbs/5kg, considering I didn’t cheat at all for the first two weeks. Then we were travelling and we tried very hard but I’m sure we went over a few times. This Saturday when we went to the movies we had to cheat; we go to the movie theater maybe once per year so popcorn was mandatory. Then there’s the matter of insanity that has been my hormones. Out of the past ~5 weeks I’ve been on my period for 3. I had no idea this was common and somewhat “expected” when you’re on keto. That’s okay, I can deal with the extra hassle of it all. But that also means I plateaued for 3 weeks. Which has done glorious things for my own motivation and desire to keep it up. As I’m sure you could understand. Combine that with the meal planning, shopping, cooking, and portion controlling every single meal we’ve eaten for the past month…

Some metrics:WL

  • Neck 3″ loss
  • Underbust 3″ loss
  • Waist 2″ loss
  • Hips 2″ loss
  • Overall loss 11.8lb
  • Average Loss/week 2.9lb
  • Projected date for reaching goal weight: 12/5/14

Real Estate Search Day 1100ish

We’ve now been house hunting for more than 3 years.

I could go on a pernicious and vile rant about how house flippers are on par with major corporations in terms of evil done to communities and low income families.

Frankly, I’m just tired of it. If it’s got 4 walls and isn’t falling down I’m ready to see the house.

This is what giving up looks like.

This Week Is a Week

Had a really crappy week. There was a lot of this… WP_001273

Which meant cranky kids and a not so nice environment. I seam ripped all of the bad stitching in Kiddo’s quilt and I’ve started straight-line quilting in “the ditch” ((Most of the stitches are TOTALLY not in the ditch)). I’m not too far in but I wanted to share my lovely quilting clips… WP_001275 Finally a use for hangers that have been removed from their heads 🙂

That time a Verge article made me cry…

A year ago (Holy crap, it doesn’t feel like it’s been that long) Paul Miller left the internet, The Verge paid him to write about his offline life experience after having his life be so entrenched in the tech world. Yes, I realize I’m blogging about a blogger who blogged–sue me. He came back to the internet on the 1st. Within the article there was a video documentary sort of interview thing. That’s where I got this quote from him:

I’m kind of depressive, for me that means that just sometimes it kind of hurts to be alive, it’s just like-it’s just AH, you know, it sucks that you gotta kind of do each day and keep doing the next day and, it’s just, moments hurt sequentially and when I’m bombarded, you know, with information and stimulation and I can always fill that need every time. I feel like I’m getting bored and I’m not happy so I can go and do something really quickly to kind of fill that need. I think I can confuse the issue and confuse the subject and kind of not quite understand the way I was feeling was deeper than just ‘I’m bored right now.’ It had something to do with ‘I’m deeply stressed that life goes on.’

It was something that absolutely rang true when I was watching the video that I had to transcribe it and put it somewhere safe. I don’t know that my blog is a safe place but I needed to share it.

I also teared up when his niece thought he just didn’t want to Skype with her for a year. So sad how kids take things so personally but generally never talk about it.

Finish Up Friday – April 19

I have a lot to cover this week and I thought it would be best to just do one big post.

Finished Honeybun’s quilt first. I mixed hand quilting, freemotion, and tying to get this one together. Instead of a separate binding I went ahead and just rolled the backing around and straight stitched it. I was eager for her to be able to use, play and cuddle it so I rushed it a bit. WP_001164 (1)

I’m also nearing the end or am forced to since the baby shower is on Saturday but I’m trying so hard to get this quilt done that I’m thinking of skipping sleep tonight. It’s a very simple quilt based on the Ragged Squares tutorial by Amanda Jean. I’ve done it for my last shower quilt as well and it feels like it came together a lot nicer this time around. Might have also had a lot to do with a new machine and a LOT more experience with sewing than I had more than a year ago. I’m still not super happy with the freemotion quilting I did on it but it’s better than nothing.WP_001165 (1)WP_001166 (1) - Copy (yes it still needs thread trimming and all the rest of that stuff)

Really hoping to sit down and seam rip Kiddo’s quilt, I know that’s been on my todo list for a few months now but with doing the podcast, raising kids, keeping house, and all the rest it’s been pretty impossible to not neglect something in order to work on something else. I saw a some e-card thing with a man on the phone saying, “So-and-so is quilting today so you might want to bring paper plates, food, and a table to eat if you’re coming over.” That’s what basically happened last weekend when I was at my machine for the majority of time. Funny stuff.

Current Projects: April Week 1

It’s kind of depressing how little progress I made in March. Mostly because of PAX and being sick. I finished Kiddo’s lap quilt finally. Sadly he doesn’t seem too crazy about it. Honeybun’s quilt is still being hand quilted through a spiral sort of pattern. Kiddo’s twin size quilt is still in a state of needing to be seam ripped. The baby quilt I’ve been working on is sitting on top of my machine and has been for about a month :(. I wish I had more time to devote to my projects but I feel like I’m way too busy with work and kids to do anything. Images below the more tag. Continue reading