Posted by: kherome | August 20, 2010

On days like this…

On days like this, when I feel awful (sick, dizzy, nauseated, exhausted, and sad) I grasp at things that offer me comfort and are tied to pleasant memories. One of those things is my all time favorite movie “50 first dates” with Adam Sandler and Drew Barrymore. This move is WONDERFUL. For some reason this movie soothes me and makes me feel so much better, at least mentally. I actually own more than one copy of the DVD, JUST IN CASE something were to happen to one copy! LOL

What is it about this movie that affects me so? It’s hard to say. I’m guessing it has a lot to do with the fact that my husband and I were married in the Caribbean and the scenery reminds me of  that happy time. It also includes the COOLEST car ever made by anyone, anywhere, the Volkswagen Thing. (Seen below)

And who can forget our good buddy Ula? (I’m probably not spelling that right, but that is how it’s pronounced.) I love Rob Schneider, he cracks me  up. His role of Ula is probably my favorite of all his roles. (Though Deuce Bigalow is a close second! LOL)

In the movie, there is a running joke about “Spam and Eggs” as a meal. However, anyone who’s ever been to Hawaii can confirm that the Hawaiian people are quite fond of Spam, and it’s served in almost every restaurant they have down there! I can personally confirm that a common Hawaiian  breakfast is Spam, scrambled eggs, and white rice. Other than the fact that I don’t eat red meat, I did like the eggs and rice together. My husband enjoyed the “Locals breakfast” at least once while we visited Maui.

But anyway, back to the movie…who can resist the love between Henry and Lucy? Henry, a playboy, falls in love finally…but it’s with a girl who has brain damage so severe that she thinks every day is the same day and can remember nothing that has happened to her since the time of her accident. Despite her handicap (which, frankly, is relatively minor IMO) Henry loves her and takes on the task of making her fall in love with him over and over, every single day.

So, thats my favorite movie, and it does wonders for my state of mind most times. And by the way, if  anyone knows where I can get ahold of a dress like the one Lucy wears on the cover art (1st photo) let me know! I love it. And if anyone has a VW Thing for sale, I’d  like to know about that too!

Posted by: kherome | August 16, 2010

Who ARE you?

When I check in on my blog tracker, it tells me I’ve had “X number of views” on a given day. What I want to know is: Who ARE you?

Post a comment, say hi, tell me your story and what brought you to my blog! I’m always up for meeting a new EDSer, or anyone with a CTD of any type.

So tell me, who are you?

Posted by: kherome | August 16, 2010

3e Love

Support 3e Love!

Embrace diversity, Educate your community, Empower each other!

This company has developed the logo you see here. They sell items with this logo on it in their store. I personally love the logo! Check them out!

Posted by: kherome | August 15, 2010

EDS is so complicated

Well, as usual EDS is taking me on a roller coaster ride.

I started having tons of heart palpitations. The sensation is of a “skipped beat” but it is actually what is called a PVC or “Premature Ventricular Contraction.” This occurs when the beat of your heart is dictated by an electrical impulse from the ventricle instead of the proper node. So I ended up in the ER and they gave me Metoprolol, which is a betablocker, to attempt to suppress these  PVC beats. If that doesn’t work, it’ll be a surgery called “Cardiac Ablation” where they find the faulty electrical impulse and burn it to prevent it from causing any more inappropriate beats.

So I wore a Holter monitor for 48 hours. I was to document every time I felt a PVC. In the 48 hour time span I documented over 100 PVCs. I had my yearly echo done last friday so we’ll see what results I get from that! Remember, ALL EDSers, regardless of type NEED an echo EVERY YEAR. I have EDS type 3 (HEDS), and go faithfully each fall for my echo.

I also had to see an Orthopaedic Surgeon about my hips. He suggested a surgery on my IT band to relieve the pain. Not so sure I’m ready for that…

Posted by: kherome | July 30, 2010

My hips don’t lie…and no I don’t mean Shakira

My hips reached such a frenzied level of pain I finally gave in and went to see the surgeon. Good news/Bad news…Good news, I don’t need a hip replacement yet! Bad news, I still need to have my hip sockets scoped out because there is debris in the sockets from my chronic dislocations. I’m not sure about having the surgery. Surgery is always so dicey for us EDSers! I guess I will have to make a decision soon, but for now I am putting it off.  I am seeing the scoping surgeon for a consult, but I plan to put off a decision until I see the Geneticist again to get an opinion from an EDS expert.

In other news, I am rapidly approaching my 29th birthday. I’m feeling a little sad, because it’s one year closer to 30! Yikes! 30!

Posted by: kherome | July 14, 2010

EDNF conference

The EDNF conference in Baltimore is this weekend. Many bendies are going and hopefully it’s great fun and very informative.

I chose not to go for several reasons. The first and most important is the cost. I was disappointed to see that a conference for disabled people (most of whom live on disability payments) costs so much to attend! For me to go, with conference fees, flight, hotel, food it would have been about $1000. For that price I could easily spend a week in the Caribbean! The other thing I think should have been different for the conference is that it should be located in the center of the US. This would allow for easier travel for many. Central locations are always best, not one coast or the other. Having it way over tucked up in the NE of the USA makes it extremely costly to travel there for pretty much anyone west of the Mississippi.

Regardless I hope those going do have a great time and learn lots!

Posted by: kherome | July 8, 2010

Living a full life

Check out Ricochet, you’ll love her! Ricochet has devoted her life to helping disabled individuals realize their potential.

Posted by: kherome | June 19, 2010

Latest and Greatest

I have had increasing issues with my EDS, and my local doctors are at a loss. So, I am flying out to see Dr. Francomano. It’s a shame a person has to fly across the country to get appropriate health care. But since that seems to be the case, I’m scheduled to do just that! I’ve met Dr. F previously at Mayo Clinic, and she was lovely so I’m happy to be seeing her again.

My wheelchair is due in on Monday. I’m looking forward to it! The Quickie Q7 is the lightest chair on the market, and can weigh as little as 14 pounds. Mine is slightly more due to the way I had it made, but it’s still very light weight! I’m hoping that it helps me get around on my worst hip/back pain days.

For those on Facebook, Chase Community Giving is running their charity giveaway again! EDS Today is currently holding the top spot! Please keep voting for EDS Today so that we can earn money for EDS research!

Posted by: kherome | April 21, 2010


Well, at long last I have decided to give in and accept a wheelchair. I’ve been told that due to the poor state of my hips that I need to take a load off of them as much as possible. I resisted for a long time because I wasn’t interested in the hassle, and stares that would come with being in a chair. I can walk, but only short distances, and slowly. It’s become such a detriment that I can’t refuse anymore. I am slow at the grocery, and have to stop and sit several times. My poor husband has to adopt a snails pace to walk with me, and I just hold him back. I have to decline to go to events like fairs, races, or places like the mall or the park because I can’t walk all over the place and I never know if I’ll be able to find a seat. So I got approved and set up a fitting for an ultralight wheelchair. I’m hoping to look at the Quickies, Flights, or Invacare ultralights. I have to have the ultralight in order to be able to lift and propel it without dislocating my joints. I’ll update when I know more!

Posted by: kherome | April 14, 2010

The latest!

Despite 3 months of perscription vitamin D, my levels refuse to come up. So it’s another 3 months of treatment and a recheck for me.

Lately I’ve had problems with some wicked dizziness. Last night, I walked right into the corner of a wall…talk about embarassing! I hate the sick, headachey, dizzy feeling.

Next month we’ll be taking the first vacation we’ve had in ages. I am pretty excited, and hoping I will be feeling ok enough to enjoy myself. We’ll be spending a week in Hawaii. I’ve contacted the airline and arranged for a disability accomodation so hopefully the flight will be as painless as possible!

I have an appointment to see Dr. Tinkle! Sadly, his first available is in September! Dr. T:

My holter results came back, I had some PVCs and PACs. The doc said that if I become symptomatic to the point where it’s affecting my daily life we’ll have to look at medications or ablation surgery. Neither option thrills me.

I’m desperate to avoid ending up in a wheelchair. While I realize, logically, that I’ll probably need one at some point, I just can’t stomach the idea. At my most recent doctors appointment I was trying to describe my pain and symptoms (again). My doctor, while sympathetic to my plight, informed me that it’s past time for me to start seriously considering leaving work and applying for disability. I can’t even begin to think about that though. I’ve heard from so many others that the process is so long and hard and frustrating. I don’t feel like I am physically or mentally ready for something like that. I’m certainly not financially ready for the loss of my income. That’s terrifying. So I ended up leaving my appointment with little to help me, other than a new handicapped parking permit…which made me sad as well. Yet another concrete reminder that I am disabled.

So, next month I see a new Rheumatologist, and in September Dr. T!

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