Friday, November 27, 2015

On Comparison

I took a walk around the neighborhood tonight. Without the walker, which is always risky. But I have to do it. I need to feel freedom...the freedom of being on my own two feet, if only for a little while. I'll hold on to whatever feelings of freedom from this life I can find. I knew when I made it back to my place, I would be weaker than before. I knew that I would need to put on my oxygen mask and that I would have to lie down. And it was yet another reminder, along with the many reminders I am presented with each day, that this is really my life.

I acknowledge how lucky and blessed I am that I can do such a thing...the choice of risking myself to take a few precious steps with the normals. I try to remain grateful for the times that I'm on my feet. I'm not always able to stand up and walk, and some people never can. I have to think about them, always, to maintain perspective. Because if I think about all of the normal people living their normal lives, it crushes my soul. And the soul-crushing reality that I'm not one of them forces me to remember the suffering, which unacceptably but undeniably includes me.

Comparison is a thief. I mustn't let it steal from me. I've lost enough.

Thanksgiving 2015

I spent Thanksgiving with my brother, sister in law, and her family in Grand Bay, Alabama. I contributed some glorious loaded mashed potatoes. I'm so proud. :-)

It was a really good day. My body handled it better than expected. The effects of over-eating and too much physical activity didn't hit me until today. It has been a really bad day, I have to say. Two hours sleep, violent nightmares, severe pain head to toe, and the usual muscle weakness = rough times. It could have been worse, and I'm still 100% grateful that I had an acceptable day with my family the day before. Thanksgiving is my favorite holiday.

I even let my Facebook friends choose my wardrobe, which was amusing. They have pretty great taste, and I trust their judgment much more than I trust my own. I have ZERO fashion sense. But I dressed up, and it was fun. I even wore a cute black hat (not shown...sorry, or you're welcome, whichever applies).

I can't go without showing y'all (via Facebook screenshots) the incredible sunrises and sunsets we've been having. November is always the best month for them. I don't know why that is, but they're always spectacular.

Sunrise November 24th

Sunset November 24th

Both photos courtesy of Jim Howton. Not altered. If you want proof, check out Mobile, Alabama Mayor Sandy Stimpson's Facebook videos here and here. Doesn't get any better.

Hope everyone in the U.S. had a nice Thanksgiving. As we move into the official holiday season, let us remember that not everyone feels happy during this time of year. Let's be kind.

Monday, November 23, 2015

21 Truths People With Muscular Dystrophy Wish Others Misunderstood

I want to thank the Muscular Dystrophy Association for featuring one of my comments in this new article from The Mighty entitled "21 Truths People With Muscular Dystrophy Wish Others Understood".

Please feel free to read and share so others can learn more about Muscular Dystrophy. The only way we can eliminate the misconceptions is through awareness.

Thank you friends.

Wednesday, November 18, 2015

MDA clinic NOLA

Yesterday, I went to my first appointment at MDA of Southeast Louisiana's clinic at LSU New Orleans.

It started off great, but unfortunately ended in absolute shame.

The physician doesn't deserve another minute of attention from me, so I'm sharing the link to my Facebook post about it.

I'm returning to Mississippi MDA next year to discuss future services, assuming I am able to make the trip to Jackson. If I can't, I will just have to survive without the MDA.

Never making that mistake again.

Saturday, November 14, 2015

We, The Media

Every day, I find myself thinking about how much the media needs an unprecedented overhaul. I see so many people say believers are crazy and shallow-minded for praying or having faith in a higher power. Unfortunately, some of those believers are obsessive-compulsive, delusional, hateful, and downright sickening. As a believer who isn't those things, I understand and share your frustration.

But you need to understand that it's equally shallow-minded and wrong to blame and hate on theism as a whole for the words and works of extreme radicals. These people are a minority, whether you want to acknowledge that or not, it is a fact. The nuttiest people are always the loudest, and they are the ones the media cling to, as the media are dependent on such.

You see I'm not naming names or a specific religion or lack thereof. That's because undeserved hate is happening to all of them. The "Christians" hate the "Muslims" and the "Atheists" hate the "Christians" and the "Muslims" hate everybody and the "Buddists" think we're all a disgrace. I could go on and on, but if you are intelligent, you get the point. To abuse your entire belief system to cite which entire belief system you want to abuse will never not be crazy and it will never not be shallow-minded and it will never not be wrong.

People deserve to be viewed as the individuals they are, and to be treated accordingly. Stop stereotyping entire groups of people to justify your xenophobia and feed your superiority complex. It's disgusting. It's unintelligent. It's beneath you. It's beneath everyone except the small percentage of demented, attention-seeking freaks who are sensationalized by "the news". Do we need to know about these people? Absolutely, so we can rise up together and end them. We need to know every detail of their sick, horrible plans in order to protect ourselves and each other. But we have gone far beyond that. All who worship the biased media are guilty of glorifying these nutjobs by granting them the label of what they claim to represent. You know that is exactly what they want, right? You are giving the psychopaths what they want - to brainwash society into believing that they are the standard. Humanity deserves better. And our future generations certainly do.

In this digital age, "the news" and "the people" have merged to become one massive fight on the playground. We've become the media. It's high time we become smarter than that.

© 2015

Friday, November 13, 2015

Paix Pour Paris

Heart-wrenching moments like the ones we are witnessing in Paris tonight are hard reminders that reality is raw, it doesn't show favor, and it can be unspeakably unfair. I know anybody with a heart wishes we had all the answers to all the questions, and I also know that will never happen. But the least we can do is give a damn, show kindness at every opportunity, and be the best human beings we can be. I wish it were a universal goal.

There's no controlling the psyche of this turbulent world, but we have it in ourselves to represent the selfless and unconditional good of mankind, if we will only choose to.

There's no excuse. We should all choose to.

Grieving with you, dear France.

Wednesday, November 11, 2015

Jessie's Story

Photo Credit: Robin Hood Foundation

Everyone in this country needs to hear Jessie's story. She and her children are one family in millions of families who didn't ask for the circumstances they are living in. They are honest people trying their best to survive and be productive members of society in spite of the horrors they've endured. Every time you vote for legislators who oppose government subsidies like HUD, FAFSA, and SNAP, you are contributing to putting these good people back on the streets, in violent homes, or into lives of turmoil and crime. This woman, those teenage girls, and those 8 year old twins don't deserve that, do they? No. The answer is and will always be NO. They do not. And the fact of the matter is that the vast majority of citizens receiving these benefits are just like Jessie, Sierra, Annabella, Tristan, and Anya.

If you think you don't have to contribute to the good of your neighbors because their plight doesn't affect you, open your eyes and take a look around. The results are everywhere. Domestic violence shelters are at triple capacity. Homeless people are holding cardboard signs on the streets and begging for loose change in parking lots. Public mental health facilities are shutting down, leaving the mentally unstable without treatment. Crime is rampant. Jail is a shelter that offers a roof, three meals a day, and regularly-scheduled medical care. That's better provision than many innocent people, including children, the elderly, the disabled, and our beloved veterans are able to obtain in this nation. Are you okay with that? Do you think neglected, abused, uneducated, impoverished, hungry, or homeless people aren't going to take that risk? Of course they will. It is human instinct to fight for survival. Put yourself or your kids or grandkids in these circumstances and see what risks you're willing to take to resolve it. You may be surprised, but you shouldn't be.

Wake up, face the facts, and act accordingly, or keep your mouth shut about the state of our communities, our society, and this nation. Don't stick your head in the sand and be part of the problem. Be part of the solution.

Sunday, November 8, 2015

Genealogy Blog

My genealogy blog is finally in progress.

I will be covering all sides of my direct family line, including Bouzage/Bosarge, Baudry/Baudreau (dit Graveline), Choctaw Nation, Clark, Seiple/Sciple, Savell, Watkins, and more. The documentation is extensive, and this will be a journey that carries on for years to come, but I've finally gotten it off the ground. I've begun with the year 1566, but I will be bouncing around quite a bit as I tackle different sides of the family. As you will see, I offer a few thoughts about my findings in addition to the written facts. There will be detailed stories and even photos to share as I progress into more recent times. My list of genealogical references is in the works and will be published in its sidebar eventually.

Thanks to those who have found interest in my family history.

Thursday, November 5, 2015

NaNoWriMo 2015 - Excerpt

Quick as a dinner prayer, the water arrived to the front porch, its choppy waves crashing upon the old steps with reckless abandon. Ellen's eyes widened as she held tightly on to Baby May. Charles pushed the blankets against the door as hard as he could. Even if the water didn't get them, the wind might. It seemed as though a freight train were roaring across the roof.

“Get away from there,” Charles ordered. “Now!”

Benjamin turned from the trembling window and watched in fright as the thin wooden walls contracted around them like a pair of lungs fighting not to collapse.

- Excerpt from The Children of Mossy Hollow

Sunday, November 1, 2015

My experience with Keveyis for Primary Hypokalemic Periodic Paralysis

I'm here. Sorry for the delay. It's been an interesting couple of weeks.

I received Keveyis within 24 hours of my doctor signing the script for it. The mail-order pharmacy who handles this transaction is very efficient, and also great at communication.

Before I proceed, I want to make it clear that I am sharing only my personal experience with this drug. As a patient with severe Primary Hypokalemic Periodic Paralysis, I knew things could go one of three ways: no change, more stamina, or crash and burn.

I am sad to say I fall into the latter category.

With my first dose, I was flat on my back in an episode. Nothing else caused it. I am 100% sure it was the drug. I opted not to take the second dose on the same day, and instead waited until the next day to try to recover a little before trying again. The next day, weaker than usual, I decided to take half a dose of Keveyis along with my potassium script. I became weaker, although not paralyzed like the day prior, but too weak to function. I spent the day drinking my emergency stash of liquid potassium. Sometime in the middle of the night, I decided to make another effort with both my slow K+ and fast liquid K+ accompanying a fraction of a dose of Keveyis. Things continued to go downhill. I went into tachycardia, and ended up flat on my back again, barely able to make it down the hallway to my bed. At that point, I knew it was time to discontinue the medication until I spoke with my doctor. The side effects of these episodes lingered for much longer than they should have. I remained very weak for 10 days, and during that time, I was too easily affected by triggers around me. Lights, sounds, smells, foods, the least little movement, and adrenaline release from being startled (by a huge bug, if you're curious) were all a bigger problem than usual. All of the above is a clear sign that my potassium was far too low, and it took a great deal of potassium and rest over a period of a week to bring me out of it. I began Keveyis on October 20th. I was up and around and able to drive a little bit again on October 30th.

Why I took more than one dose:

People who don't have this condition may wonder why I made three attempts. The reason for that is simple: the same thing happened to me with Diamox (acetazolamide), and after many adjustments to the medication, I eventually found a (very small) dose that worked. Albeit, the side effects are terrible, but the tiny amount I'm on with accompanying potassium and potassium-sparing diuretics has made a pretty big difference in the quantity and severity of my episodes. I used to paralyze every day, folks. Every. Single. Day. And while I remain very weak (which doctors have said is permanent), my serious, full-blown paralytic episodes have reduced significantly on Diamox. It's miserable, but God bless it for giving me a thread of quality of life again.

Keveyis is a more potent drug, so I knew it would be risky to switch to it, but the hope was that it would work better and give me more quality of life with fewer side effects. When you're weak and crippled in your 30s, live alone, and you're fighting daily to be as independent as possible, you take these kind of risks. I'm sure I don't have to tell you how disappointed I am that things went so badly. It's pretty devastating. Improvement was absolutely possible, but with my body being as weak as it is, and as hypersensitive as my body is to the least little drop in potassium (including in normal range...I have episodes in the 4s all the time), my unfortunate results with this powerful drug is not a surprise.

Why this class of drug is effective in treating Periodic Paralysis:

Keveyis and Diamox are carbonic anhydrase inhibitors. CAIs act as diuretics while also slowing the release of insulin. Both of these actions are important. In HKPP (HypoK, which is me), episodes are triggered by excess sodium. CAIs cause sodium to exit the body, thus preventing those episodes. Episodes are also caused by insulin releasing into the blood stream, pushing glucose and potassium out of the blood stream and into the muscle cells, resulting in depolarization (paralysis). It makes sense to say that the faster and more extreme the release of insulin, the worse the episode could be. Therefore, a drug that slows down the release of insulin is inevitably helpful to someone with HKPP, assuming the patient is taking potassium to keep their blood levels up. Which brings me to the Catch-22 in this thing: in addition to ridding the body of excess sodium, CAIs also waste potassium, which is big trouble for HKPP. Supplementation is necessary in order to prevent a decline, which is what happened to me. I'm already on a TON of potassium, both slow and fast K+, but it wasn't enough to compensate for the fall. I am still waiting for my doctor to respond to my phone call concerning the possibility of higher doses of K+. Most likely, this isn't going to be an option.

I refer to insulin and sodium as bullies on the playground. If the bullies run slower than you, you won't get pushed in the mud. :) Make sense?

On the other hand, if you have HYPP (HyperKPP, meaning episodes caused by too much potassium in the blood), CAIs help because they are potassium-wasting. Someone with HYPP would in turn eat salt and sugar to maintain balance, because they need sodium and insulin working with them to push potassium out of the blood stream. It's a little more straightforward than the HKPP situation, but success isn't guaranteed at any rate.

I hope this helps to explain what Keveyis' job was, and why it didn't work for me.

Again, let me be absolutely clear on this: The drug works for some patients. Not just a little, but very well. I've heard from people who said it's a dream come true and that life is better now. I am positively thrilled for every one of them, and hope they continue to thrive on Keveyis. It is very important that they are able to access this absurdly expensive drug, and I'm glad to know that Taro Pharmaceuticals has such an extensive assistance program designed to help Periodic Paralysis patients obtain the medication. I am relieved on behalf of my friends who suffer with this condition, and I will continue to support them and talk to anyone who needs to know about the possibilities of a better life with Keveyis.

Thanks for reading. Email me if you have any questions, with "Keveyis" in the subject line.

Friday, October 23, 2015

Hurricane Patricia

How amazing a time we live in 
that we can look at our turbulent world from the outside.

Tuesday, October 20, 2015

Renal and Internal Medicine Clinics (Part 2)

I don't think people understand just how much any kind of physical activity can knock an HKPP patient flat. What's remarkable is at times it is a delayed reaction, so I can get through a day of heavy activity such as traveling to Jackson for renal clinic (an 8 hour round trip), but my worst moments are the following days. If you're familiar with HKPP, you know this trigger is called "rest after exercise", and it's a doozy. It also never helps when it's insanely hot outside and insanely cold inside, which was the case here. Fluctuations in temperature can result in serious paralytic episodes. I know because I've had them. This condition is painful, frustrating, and complicated, and I don't always cope well, but I try. I am very lucky to have some wonderful friends on Facebook and elsewhere who follow my journey and keep me encouraged with their love, prayers, and well wishes. I'm so grateful to them all.

Next renal clinic is in March, if I can find the funds somehow. The hospital has informed me that I am not eligible for financial aid now that I live where I do (recently moved), so I might be in trouble. If I absolutely cannot handle the cost, I will discuss my options with Dr. M. I hope something will work out so I can continue to go to Jackson.

I'm still having a hard time keeping my potassium level in an acceptable range. When a trigger occurs, and it does so often, it isn't always easy to bounce back to my version of "normal". The rest of my numbers look pretty good right now with the exception of Creatinine, which is slightly elevated again, and Vitamin D, which is still too low in spite of being on a whopping 100,000 IU a week. For the love of God, what is it going to take? Dr. B is increasing my dosage to 150,000 IU a week, which is rare and risky, but I've got to get those numbers up somehow. We'll see what happens.

The great news is that I don't have Hashimoto's Thyroiditis. I know several people with HKPP who have it, and it would have explained some of my symptoms, including the low D, but my numbers were normal. Renal clinic in Jackson may have very well done these same tests, but I don't recall, so I wanted to make sure to rule it out. I'm glad I don't have to think about it anymore.

I have a Keveyis update. It will be posted in the next couple of days.

Tuesday, October 13, 2015

Internal Medicine Clinic 10/13/15 (part 1)

I went to see Dr. B this afternoon to follow up from the drama that ensued back in June.

I've lost some weight. More to go, but I was surprised and relieved that I had not gained.

My potassium remains on the low-normal side, in spite of my heavy supplementation. It could be worse, but I really do need it to improve somehow.

My creatinine was high once again. It keeps fluctuating between normal and high. We have no idea why this is happening, but it seems to be the nature of my kidneys. Seventeen years ago, I was crippled in the hospital, and the doctor told me that my kidneys are frustrated. In fact, he documented it as whatever "kidney frustration" is in German. What it boils down to is that my kidneys are working harder than average to try to be normal, and they get exhausted sometimes (as does the rest of me). My electrolytes and other substances, such as hormones and blood sugar, also fluctuate quite a bit. I've come to the conclusion that it's all related to the fact that I have a channelopathy, but I'm no medical expert (just an expert patient).

I feel like I'm getting a sinus infection, but I am unable to safely take antibiotics or antihistamines, so I was given samples of Deconex DMX in hopes to keep the issue at bay. I'm pretty miserable at the moment. Wish me luck.

My Vitamin D, which stays consistently low, was checked. The results should be in tomorrow. We talked about the fact that I have a history of pulled and torn cartilage and skeletal muscle, which points to Osteomalacia (adult Rickets, caused by chronically low Vitamin D). I'm on a very, very high amount of prescription D, but he said he'll raise it even more if we have to. My body clearly has some sort of problem with absorption.

We talked about my digestive system, which has always been pretty lousy. I have a hernia, severe acid reflux disease, and Gastroparesis. All of the above are painful and problematic. I'm going to increase my over the counter magnesium intake to see if that makes a difference. Surgery is out of the question thanks to my high risk of death under anesthesia.

Doc and I agreed to a complete thyroid panel, which will look for peroxidase and thyroglobulin antibodies. This test will rule out Hashimoto's and other thyroid conditions once and for all. I'll have results in two days.

Thus the reason why this is part one of two. I'll update with the results later this week.

No progress on obtaining Keveyis. I've left a voice mail for the nurse to follow up.

Friday, October 9, 2015

RIP Paul Prudhomme

Kathleen Flynn/The Times-Picayune/Landov

I'm a proud Creole-Cajun, as many others here on the gulf coast are. We owe most, if not all popular Creole-Cajun recipes and culinary techniques to this one man.

Paul Prudhomme was an absolute legend in the world of Southern American cooking, and he will be remembered always.

Wednesday, October 7, 2015

Crying In Strength

Although I don't cry regularly, I do cry at times, usually out of exhaustion or worry. I get tired of memes and quotes that refer to crying as a weakness. Even the ones that mean well aren't getting it right. You know the one: "Crying is just a sign that you've been strong for too long". It still implies that giving in to crying is a loss of strength - which is frustrating and utterly wrong.

It would do the world so much good if we would simply embrace the emotions we were born with and accept that they are part of the human blueprint. That is not to say that you should be crying nonstop in a state of hopelessness, nor displaying other emotions, such as anger, in an unhealthy manner. But releasing emotions, including tears, as a productive measure is not only okay, it's the right thing to do for your health and well-being.

I'm glad someone is talking about it. Facing life in a realistic way is strength, not weakness. We should do what we need to do to process our daily lives, and that includes emotional responses.

The first week of October (in pictures).

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on
 I'm so tired, but I'm trying to be productive at least part of every day.

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on
I finished up the zebra project for Periodic Paralysis Association, and I really like how it turned out.

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on
It's that time again - chocolate season! I'm working on some new goodies this year, and I'll share more pics soon of the cute candies I'm making for upcoming events.

Speaking of events, I've got a couple of cosplay opportunities coming up, so I'm digging through my closet and searching the net for steampunk ideas. Stay tuned for the finished costume, hopefully ready by Halloween. This is, as always, not set in stone due to my unpredictable condition, but I hope to participate in all that I have planned for the rest of the year (especially since it's all free of charge).

Last but not least, I signed up for this year's National Novel Writing Month! I'm labeled a NaNoWriMo "Rebel" as usual, as I will be working on past stories as well as starting new ones, including some non-fiction. I'll try to keep you posted on how things are going.

Still in limbo concerning the new Periodic Paralysis drug Keveyis. I'll hopefully have some kind of an update by the end of the week.

P.S. - I've been trying to get the text in my posts to align left, but it's not working. That's why everything is centered. I know it's annoying. I'll figure it out eventually.

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,
thus my hiatus and the new backdated blog posts this month.

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

I took video of "Pascagoula Run". It can be found HERE.

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 (part one?)

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 me on that. You don't want it. Yet taking in average amounts of sodium in my diet is too much because it triggers 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

These pieces will be auctioned at the Periodic Paralysis International Conference next month. I will consider prints if there is enough interest.

In medical school, doctors are 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.

Saturday, August 29, 2015

Hurricane Katrina: 10 Years

I was going to post a heavy blog about the 10 year remembrance of Hurricane Katrina, which gutted my state's entire beautiful coastline. But I've decided not to do that.

Most of us have seen plenty of images.
Some of us saw the nightmare firsthand.
We lived it.

But more importantly, we lived through it.
We are survivors.

I'm proud of the Gulf Coast for its resiliency and restoration post-Katrina. We've proven our courage to not only survive, but thrive. As many of us were, I was changed and displaced, but I remained on the Gulf Coast and I'm glad I did.

No matter where life takes me, it will always be my home.

Wednesday, August 26, 2015

I Have Systemic Disease - An Open Letter of Awareness

I have systemic disease. That means every system of my body is broken in some way. I live with muscular dystrophy, chronic kidney disease, migraines, obstructive sleep apnea, sleep deprivation, musculoskeletal disease, depression, chronic fatigue, severe chronic pain that I never escape, and more.

It's terminal and irreversible, no matter what you think.
I'm not lazy or crazy, no matter what you think.
It has no effect on intelligence, no matter what you think.
I may be tired, but I'm not dumb, no matter what you think.

The next person to tell me to try harder or be positive, call me names, judge my life choices, or look at me like I'm some kind of freak may never fully recover from my reply. That sounds harsh, but I have to do whatever is necessary to protect myself. It took over 30 years to grow a backbone, and nobody's words, actions, or assumptions will take it away from me. I'm still a pushover at times, but I'm figuring this out as best as I can. I'm practically Bambi at birth, both physically and otherwise, awkwardly trying to keep my legs underneath me. It may seem ridiculous to you, but I'm going to stand even if I'm the only one standing.

I thrive in solitude, but I also admit that it is very hard doing this alone, and I am forever grateful to those who are standing with me. Not just today, or this week, or when I'm having a decent day, or when I'm agreeable. The turbulent times of unbearable pain, exhaustion, loneliness, grieving, and anger are when the strength, care, and grace of others are needed most, and I am so thankful for those who rise to the challenge. You don't have to, but you choose to, and I don't take it for granted.

We have awareness days and awareness weeks and awareness ribbons and awareness marathons, and that's all nice. But at the end of the day when the awareness ends, the battle still rages every minute of every day, forever. Those who suffer from chronic illness didn't sign up for this war. There is no pay and there are no benefits. There are no coffee breaks, no vacations, no "back to normal". This is normal. Sorry for the inconvenience, healthy folk, but this is it. No matter what you think. But in spite of our unfortunate high maintenance, I believe most of us don't expect miracles, want special treatment, or demand the unreasonable. I believe most of us only ask for the same kindness, consideration, and respect that anyone else does. Our bodies may have changed, but our value hasn't changed. Last time I checked, broken crayons still color the same.

I wanted to share all of this today in hopes of encouraging the cheering section to keep cheering, the caregivers to keep caring, and most of all, the warriors to keep fighting. Together, we can do this thing.

I love you all, even when I'm cranky. I love you all even when you're cranky too. Now let's group hug and kick this day's ass.

Thursday, August 20, 2015

Josh Duggar, Ladies and Gentlemen

I didn't talk about the Duggar molestation scandal here because it struck a nerve too deep to talk about it without anger, stress, or harsh speech. If you were following on Twitter or Facebook, you know how I feel about it. But I decided not to post my thoughts here.

This, however, is a different story.

Family Values Activist Josh Duggar Had a Paid Ashley Madison Account
(he had more than one, actually)

Josh Duggar Admits to Cheating on Wife

"I am so ashamed of the double life that I have been living and am grieved for the hurt, pain and disgrace my sin has caused my wife and family, and most of all Jesus and all those who profess faith in Him."

Oh, yawn.

Newsflash, Josh Duggar: When you truly regret an action, you repent (the word means "to change or turn away from") and never do it again. You had no intention of stopping, because you kept doing it without confession or remorse. You not only lied and cheated, you stole. You may be the "bread-winner", but you stole from your wife and children. You stole that money when you gave it to a company that served your sickening addiction. You are a liar, a cheater, an abuser, and a thief.

You're not ashamed that you hurt your family, Josh. You're ashamed that you got caught. A forced confession based on undeniable evidence is not repentance. You would have kept doing it. You and I and anyone with half a brain knows that.

Allow me to amend your statement:

"I am so ashamed that I was caught living a double life. I am grieved that my sins were exposed, resulting in my wife, family, and the public finding out that I'm a hypocrite and a disgrace to all who know me. I am in pain because this happened to my family and me. Especially me."

You are a self-absorbed sex addict, and the sad truth is that most people like you are never cured by Jesus nor Psychology. You don't deserve the trust of one person around you, especially that of your wife and children, and no matter how much you apologize, you will never deserve it again. Those are the consequences you and only you have brought upon yourself.

I can only hope and pray that Anna does the right thing for her livelihood and the safety of those four children.

Thursday, August 13, 2015

FDA Approves Drug To Treat Familial Periodic Paralysis

I am so behind on everything, I am just now getting to this news:

Earlier this week, the FDA approved carbonic anhydrase inhibitor dichlorphenamide (KEVEYIS) for the treatment of all forms of Primary (Familial) Periodic Paralysis.

Thanks to the Muscular Dystrophy Association​, other Periodic Paralysis researchers, and study participants who made this possible.

Drug website is here:

Drug info is here:

MDA Press Release is here:

As for me, I am already on a different carbonic anhydrase inhibitor, acetazolamide (DIAMOX), but I will be discussing Keveyis with my doctors in a few weeks. My hope is that insurance will cover it and it will give me better function with fewer side effects.

I'll keep you posted.

(Cross posted on

Wednesday, August 12, 2015

101 Days of Lovecraft

101 short stories
in 101 days

A spontaneous reading challenge by yours truly.

Occasionally being a part of the geek scene,
I've heard plenty about H.P. Lovecraft and
The Call of Cthulhu, but wasn't in the know.
That changes starting now.

Friday, July 31, 2015

My July, via Instagram

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on

A photo posted by Gulf Coast Girl (@gulfcoaststudio) on

Would love to connect with you on Instagram. More to come.

Wednesday, July 29, 2015

Too Tired To Live

On my back in the middle of the bed,
on my side on the left side of the bed,
on my stomach sideways on the bed...
cannot get in any position and be comfortable. 
Up pacing the floor as I always do, now on the couch.
Will try lying on my back again with my head 
at the foot of the bed in a few minutes. 
Daily life with chronic pain, insomnia, and sleep deprivation.