I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Wednesday, September 30, 2015

Open Heart Surgery for Sweet Pea

My precious Sadie Nicole is a heart baby.
Her condition declined, so in spite of her tiny size
they had to go ahead and do open heart surgery at 8 months old.
I'm not authorized to share photos (I didn't even ask, frankly).
The surgery was at Children's Hospital of New Orleans.
I didn't take it particularly well, but to be fair, I was the last
person to find out and it was sprung on me via text message.
I have been a very, very unhappy camper to say the least.
I made the drive to New Orleans without sleep and spent the first 3 
hours curled up on a bench by the front door, trying not to throw up.
At any rate, they successfully repaired two holes in Sadie's heart
and her recovery has been remarkable. She's doing well.

It has been a very stressful time for the entire family.

I have more to catch up on, and I will do that soon.

Monday, September 21, 2015

A Visit to Biloxi Beach

In August, I made the drive to Biloxi.
The plan was to see the Katrina + 10 exhibit
at the Ohr-O'Keefe Museum of Art.
I changed my mind at the last minute
as I didn't want to relive the memories
anymore than I already was.
So I went to the beach instead.

Sharkheads is a popular shop on Biloxi Beach.
It was decimated in Hurricane Katrina.
They finally rebuilt and opened this year.
They even brought back the airbrushed T-shirts.

Random Captain America cardboard cutout.

Painted hermit crabs!

I'm not sure how they feel about being painted.
Not sure how I feel about it either.
They are cute, however!


That dude would NOT get out of the picture,
but I took the shot anyway. LOL

Beautiful day in Biloxi.

Haven't walked on a beach since 2010.
I had no idea how incredibly difficult it would be.
It was like moving through wet cement
and I almost couldn't walk back to the
car, but I did and I survived. It was a 
pretty solid reminder, though, of how much
Muscular Dystrophy has changed my life forever.

It's a TARDIS, if you weren't sure.

Although physically daunting, I'm glad I went.
I'll always be a Gulf Coast girl.

Saturday, September 19, 2015

Jimmy Buffett Bridge Dedication in Pascagoula, Mississippi

Fun day in my hometown!
Jimmy is a cousin, although we've never met.
The family tree is ginormous.
I'm working on a genealogy blog, by the way.
So many stories to tell.
I'll share details soon, for those interested.

Sunday, September 13, 2015

August clinic and other ramblings

This is me after learning that the best doc in the world
has moved back to Hungary.

Sorry for the major delay in blogging. I've had a pretty severe case of writer's block this year, and it doesn't seem to be resolving anytime soon. Sleep deprivation/exhaustion is probably the biggest factor. Perhaps a bit of depression as well, which has been an issue this year. I am rarely lonely, but something about moving to my own place triggered some unexpected feelings of crash and burn. Like I've hit a brick wall. This is it...this is the dead end and I really am going to die alone in poverty. Pffffth...I don't know. I'm just thinking out loud, so to speak, in an attempt to process the last few years (or the last twenty, for that matter) and where it has brought me. I'm dealing with it.

Anyway, enough of that.

Renal clinic was August 27th, finally. My doctor and I had both bumped the appointment so many times, it had been 9 or 10 months since my last visit. I met with a couple of new doctors (one isn't new, only new to me), and it was then that I was informed that Dr. Fulop was leaving the country. My response was "I'm heartbroken!" and then I told them how incredibly helpful and wonderful he has been to me. The man practically brought me back from the dead, and I will always love and appreciate him for all that he has done for me.

My labs looked better than the ones I had at Internal Medicine clinic in June. I'm still having a very difficult time keeping my potassium at a reasonable level for someone with my condition. I need to be in the high 4s, if not low 5s, to function at my best. I was in the 3s at clinic, which is the danger zone. Sounds crazy to a normal person, but for someone with a channelopathy, it can be detrimental. I have been known to fully paralyze with potassium levels in the 3s, to the point of life-threatening. That said, I have some work to do in getting my K up to where it needs to be. As for the rest, my kidneys were back in normal range. They tend to fall into "uh oh" mode on a frequent basis, as this has happened several times over the years - even in my early 20s, if I recall - but they always bounce back somehow. My Internist in June was very concerned with my numbers, but Renal Clinic in August was quite happy with what they were seeing, so that was good news. It's something we'll have to keep a close eye on, but as usual they consider my biggest problem by far to be Muscular Dystrophy. Needless to say, I agree. They scheduled my next clinic for March, and I had a good ugly-cry on the way home over losing the best Nephrologist on planet Earth. God bless Dr. Fulop. I would have given him a hug and wished him well had I been given the opportunity.

Other labs included sodium at borderline low, which is something I have to be pretty cautious about, especially being on so many medications. I've been Hyponatremic before, and it's no better than being Hypokalemic...trust me on that. You don't want it. Yet taking in average amounts of sodium in my diet is too much because it triggers episodes...so go figure. It is very challenging to try to find a balance between not enough sodium and too much. Same with sugar. Both Hypo and Hyper result in serious symptoms. Balance seems to be the name of the game with this condition, and it's a hell of a lot easier said than done, that's for sure. With paralytic triggers all around, it is a constant battle. One I'd really like a vacation from every once in a while.

My Vitamin D wasn't checked. That will be done in October when I return to Internal Medicine Clinic. I did see Dr. B recently for a quick vitals check (heart rate, BP, blood sugar) and all were great. He joked that I was his best patient, ha! I'm a wreck and he knows it. He's funny, though.

I'm having a terrible time with sleep deprivation and chronic pain. I don't even have words for this right now. I'll talk about it in another post. I have more to share, and I will do that soon (really...I will. I promise).

Friday, September 11, 2015

I Am A Zebra

In medical school, doctors have been taught the metaphor that patients are horses. "When you hear galloping, think horses, not zebras." This lesson is designed to prevent doctors from wasting time and money on unnecessary tests in an attempt to diagnose patients with unlikely ailments.

Unfortunately for those of us with rare, serious diseases, we are too often undiagnosed, misdiagnosed, and disregarded because we are not horses. That's why awareness of rare disease is so vital. Sometimes we have to speak out and make it known to the medical community and those around us that when you hear galloping, it is often a horse. But sometimes, it's a zebra.

The relevance of using lower case letters is to encourage everyone who sees this image to remember this: Yes, I am a zebra, but I am so much more than that. Please don't define me by my disease. It is painfully real and it demands to be acknowledged, but it is only a small part of who I am. Thank you for understanding.