Rare Disease Day… living with a degenerative eye disease.

Rare Disease Day

 

Today is Rare Disease Day.  Let’s share to increase awareness!

Not everyone that is suffering from a disease looks like there is something wrong.  Eye diseases are one of these.  I don’t share my story often because I think people really don’t understand because it doesn’t look like there is anything wrong with me.  I find that more of a “yeah yeah yeah, I have bad vision too because I wear glasses/contacts” kind of thing happens.  But in honor of Rare Disease Day I thought that I would share my story just a bit.  And I’ve also been posting a bit more about it on Facebook because of the Olympics (Olympic Bobsled gold medalist Steve Holcomb has the same eye disease as I do).

 

I have Keratoconus, a degenerative eye disease.  I think it’s questionable if it is actually in the rare category (though the actual numbers would put it there) because many people have it that are undiagnosed.  Which is why it is so important to share and increase awareness!!  Also go see an ophthalmologist or a therapeutic optometrist NOT a regular optometrist (they will only check your vision not your eye health!  This is why so many people don’t know that they have KC!!)

 

What is Keratoconus?  It is a condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. This results in significant visual impairment.  It’s also degenerative, meaning it will continue to progress and deteriorate over time.  The cause is still unknown.  Genetic? Maybe…  Environmental? Maybe…

 

Everyone with Karatoconus is different.  Some will stabilize a bit after 10-20 years and some will go blind (like Steve Holcomb).  Some with Karatoconus (KC) have it in only one eye, some in both.  Mine is much much worse in my left eye than my right.  

I also see shadows and halos in both eyes and have double vision in my left.  It also makes my eyes extremely sensitive.  To everything.  I have terrible eye allergies and being out in bright sunlight makes me nauseous.

It makes all of the simple things like driving, watching TV and reading extremely difficult.

 

This is a pretty good example of how I see:

 

Night is very difficult because of the halos.  It’s exhausting to drive at night because I have to concentrate so hard on just being able to see the road.  Brake lights and headlights in traffic don’t help.  I have to squint very hard which helps a little with the halos, but it is even more exhausting.

 

Treatment…  there’s not much that can be done that is non-invasive.  They try to fit you for hard (RGP) lenses at first.  There are a few new soft lenses out there (sclerals and hybrids).  I’ve tried them all.  None of them work for me.  My eyes are completely intolerant to contact lenses.  There are also intacts (implanted prescription inserts).  A lot of people have success with intacts (there is no cure for KC but they can help with your vision distortion) but the procedure is very expensive and not covered by many insurances.  Then there’s the corneal graft (AKA the corneal transplant).  That was the only option besides RGP lenses when I was diagnosed…. scary huh?  There’s a new procedure that is seeing great results at halting the progression of KC, but it’s CRAZY expensive (corneal crosslinking- CXL) and not yet approved by the FDA.  Lots of clinical trials going on right now with CXL.   

 

As for me… Right now I wear glasses and do the best that I can.  There is a clinical trial that I would really love to get involved with but right now is not the time unfortunately with my internship.  I had two really good visits with my eye doctor and haven’t had to go to the cornea specialist in a couple of years because of that.  However, you can be stable for a long time and a stressful or traumatic event can trigger progression all of the sudden.  I have definitely felt some changes to my eyes in the last month.  My internship is stressful to the point that I have to tell myself daily that I don’t have time for a nervous breakdown right now and that I just need to go into survival mode and keep it together.  I will definitely need to go back into the cornea specialist soon to investigate. 

When I am having an extremely bad eye day I tend to feel sorry for myself and have been known to throw the occasional pity party.  But most of the time I’ve really just learned to live with it and make adjustments to compensate for my vision problems.

I feel hopeful with all of the research going on right now (and the disease being brought to light for the general public by Steve Holcomb) that an actual treatment (or dare I say CURE) will be accessible for the normal folks one day.

 

Well, that’s my story.  I didn’t mean to ramble about it, but since I don’t talk about it much I apparently had lots to say!

California Lavash Giveaway winner!

Hey everyone, I apologize for my tardiness in posting the winner, but we’re headed into finals here and it is a majorly crazy/stressful time!

I had www.random.org choose a winner for me from the entries in the comment section and congratulations to Renata for winning the giveaway!!!

Renata, I just sent you an email.  You have 24 hours to get back to me or I will have to pick another winner.  Congratulations again!

 

Sarah

Triumphant return and a giveaway

Let’s pretend this is my triumphant return to blogging, okay??  Unfortunately a stack of books is pretty much my life right now.  But I absolutely had to take the time for this post!  Mostly because I have a giveaway for you!!!

So if you know me at all or have read this little mess of a blog you know I LOVE Lavash wraps!!  And there’s a certain company of Lavash wraps of which I always sing their praises.  So when they contacted me out of the blue and offered me some samples and a sample pack for me to give away I said ABSOLUTELY!!!  I don’t usually take free products on the blog to review.  Mostly because I feel like a lot of bloggers have turned their blogs into one giant advertisement.  But when a company I love with an outstanding product that is so SUPER healthy asks if I want to give away some of their products to one of my friends on the blog of course I’m going to say yes!

California Lavash is my absolute favorite brand of lavash wraps.  They’ve recently gone through a rebranding.  They are now officially certified non-GMO and they also repackaged their products to make them easier to store without getting squished. 

So here’s what they sent me (and whoever wins the giveaway will get the exact same thing):

 

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I got a tote bag (which I’ve already taken grocery shopping with me- it looks small but it really holds a lot!). 

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I also got four of their amazing lavash flatbreads.  I got the garlic olive oil, traditional, spinach and whole wheat.

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You can do an almost endless amount of things with these nifty little wraps.  But here are a few of my favorites (in no particular order)…

 

The hummus wrap!  Spread flatbread with hummus, sprinkle with cheese, a few dashes of Frank’s hot sauce, place into a hot skillet and brown up on each side.

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I served mine up with a cup of tomato soup.

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I also made some super tasty crackers.  Just cut them up into cracker sized squares.  Then I spritzed them with a little cooking spray and sprinkled on some of this deliciousness from a  Trader Joes sugar, chocolate and coffee bean grinder.  A cinnamon/sugar combo would also be delicious.  Or you could go savory with some salt and pepper or a little parmesan and Italian seasoning. 

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I also made another nice little wrap with one.  I slathered on some hummus, some hickory smoked tofurkey slices and then piled on the veggies.

 

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Then I played around with the garlic and olive oil one.  This was one variety that I hadn’t tried yet.  I loved this one because it’s thick, fluffy and a little bready.  And it was PERFECT for a panini style sandwich!!  My panini had hummus, sharp cheddar, sautéed kale, onion and mushrooms.  It. was. amazing!

 

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And last but certainly not least, the flatbread pizza! mmmm….

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So now here’s the part where you win some free stuff!!!  The winner will get everything that I got- the tote, and the 4 different kinds of flatbreads.

 

Who wants some?  Come and get it!!!

To enter simply leave me a comment in the comment section below!  For one extra entry tweet or facebook about this giveaway (use the share the love buttons below!) and leave me a separate comment letting me know that you did!!   The giveaway will end 11/20/2013 at 8:00 pm central time.  At that time a winner will be randomly drawn and will be announced the next day!  Good luck!

 

Back to school!

Welllll…. actually school started over 3 weeks ago.  I’ve been meaning to post.  Really I have!  We kind of hit the ground running when school started and I haven’t had much time to do anything since then really.  We had our first big exam today and it was a doozy! 

Gone are the days of multiple choice exams and we now have lots and lots of essay questions on our exams. 

Anyway, I think I have talked about it before but how my dietetic internship works is that we have 2 semesters of graduate course work then we start our actual rotations for our supervised internships in June, then we’re done with that in December and we can finish up our masters (probably a class or two and my thesis will be all I have left to do).  We also have a few projects and some professional and community nutrition hours that we earn along the way in these first two semesters of coursework so we’re busy busy busy!

This semester I’m taking 3 classes- Nutrition in Disease, Nutrition and Human Metabolism and Eating Behaviors and Eating Disorders.  I’m also working as a graduate assistant this year for two different classes- Nutrition Through the Life Cycle and Principles of Food Preparation.  Oh yeah, I’ve also started working on the study for my thesis!

So far it’s tough and I’m more busy than I’ve ever been but I love it!!!  I think that I picked the perfect internship for me and it was all just meant to be!

 

I’ll try to update as much as I can through this whole process and I still have some recipes that I’ve been meaning to post for like forever.   I’ll get around to it one of these days!  I am making a goal to blog once a week.  We’ll see how that turns out! :)

 

Till later!!

Sarah

That new car smell

Hey!  Hope everyone is having a great summer so far.  I have to say that personally I hate summer.  The heat is oppressive and it completely drains all of the energy I have, which is part of the reason why I get absolutely nothing done during the months of June-August.  It’s funny that I hate summer so much because 1) I’m a summer baby and 2) I work on a food truck by choice (seriously a big metal box with a kitchen.  It is typically around 200 degrees on the truck.  It’s like roasting alive, no joke.)

So in summary I’ve gotten nothing productive done this summer.  I’ve started some of my internship homework that’s due in September, but yeah, that’s about it.  I had big plans for blogging this summer too, but it just didn’t happen.  I’m so exhausted from work all of the time that I pretty much don’t want to do anything when I’m not working.  Ah well.

One fun thing did happen recently though…

I GOT A NEW CAR!!!!

I wasn’t really planning on buying a new car at the moment.  I was planning on saving up for a year and paying cash for something newer.  (I hate having a car payment!)  But my beloved MINI Cooper just wasn’t going to make it for another year.  It had been having some problems over the last couple of years, but who could blame it.  I drove that poor little thing into the ground commuting 4 hrs a day for 3 yrs, plus it was 10 yrs old!  The latest round of overheating issues with it made us think that we may need to start looking for something newer.  I just felt like it wasn’t going to last much longer and it wasn’t going to be reliable for the next few years getting me to school and my internship rotations.

So I started looking around and I fell in love with the Kia Soul.  It’s adorable.  And Kia has the most amazing warranty (10 yrs bumper to bumper, and also tire and ding coverage).

We decided to go drive one and I immediately fell in love.  It drives like a dream!  I knew I had to have it.  So we had a decision to make.  We could buy now while we were sitting there in the office talking trade ins and prices even though we hadn’t intended to drive away with a car that day or we would be back in that same spot in a few months when my car had completely died.  So we drove home in my new car!!

Here it is! 

 

944227_905548566806_709142906_n954627_905547034876_1277398027_nP.S. If you’re in the DFW area looking for a new Kia, some of the dealerships are superrrrr sketchy.  Save yourself the trouble and go to Moritz Kia in Hurst.  Seriously.  You’ll thank me.

 

So it was out with the old and in with the new.  I miss my little MINI and it was really really hard to drive away from it (I think I have attachment issues haha)but I adore my new car and I feel so blessed to have gotten it!

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Also, if you were wondering how to get rid of a drought, just buy a new car.  It hasn’t stopped raining for more than like a day since I got it.

 

Till next time!

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