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

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.

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. https://www.facebook.com/ugottafriend/posts/10153103655125740?pnref=story

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

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, Seibel/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.

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.