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, February 22, 2017

Back to back clinics

On Monday, I returned to UMMC in Jackson for renal/endocrinology clinic. I am very very lucky to have doctors who listen, care, and want to learn more about this absurd disease. It is assumed that my current condition is my best case scenario, and they are relieved that things haven't gotten any worse over the last several months. We agreed that the Keveyis fiasco was a bummer. Since my HKPP is familial, they asked about my parents and whether or not I have children. I reminded them that I am the lone ranger in this thing, my parents are deceased, and I don't have kids. As always, they are interested in my story and are happy to know Facebook support groups exist. Documentation is a big concern for me since social security owns me and will occasionally review my case, but the doctors reassured me that they were keeping up with my peril in writing. They said my labs look stable, and the glass is half full in spite of my condition. I'll return in one year unless something changes.

On Wednesday, I returned to Internal Medicine at the low income clinic in my little town. Dr. B is fantastic as always, and is willing to test anything that is even mildly questionable. He knows how frustrated I am over my permanent muscle weakness and that even with my potassium level in normal range, I cannot function well enough to perform basic household tasks at times. We discussed my episodes, and how I handle them without assistance (answer: I take potassium and lie down...all I can do really is ride it out. If I am unable to take potassium, I find the nearest place to lie down and I hope for the best). He was concerned about the fact that I live alone like this, and suggested I check into obtaining a Life Alert necklace. I probably won't be able to afford it, but I'll look it up. He told me to make sure I have my cell phone within reach at all times.

He took a stat panel like renal clinic did, and the numbers matched this time. Everything looks pretty good, thanks to my overwhelming daily regimen, and it is an improvement compared to the last couple of years of labs. He sent some blood off for additional tests, and I'll receive the results on Friday. I'll write a short update at that time.

Renal clinic is across the state line, and because my insurance refuses to acknowledge that, I am forced to pay in full to be seen there. It's very difficult - nearly impossible - to afford that but I didn't find a clinic in my state that would take my case. That's how I ended up having to travel 4 hours to an out-of-state hospital. They practically brought me back from the dead, and want to continue seeing me at least once a year (I want/need to see them as well), so I am going to have to find a way to pay for it. I explained this to Dr. B and said he would do what he could to help concerning labs or whatever it is they want to monitor in me throughout the year in between my visits there. He also has a medication assistance program, and it is the only reason I have access to my vital medications (which would be around $1000 a month otherwise and my social security is far less than that per month). Low income clinics are so, so important; in fact, downright life-saving for people like me. That's why federal funding for these places must be protected. To cut off access to medical care is to literally kill people. I would be one of them, but only one of millions. God help us.

As long as nothing crazier than usual happens, and as long as my sent-off tests come back in good shape, I am done with clinics until June.

Thursday, February 16, 2017

Isn't It Funny?

Isn't is funny that the people who bash PC and demand their freedom of speech are the same people constantly whining at celebrities to shut-up?

Isn't it funny that the same people who fight for any spotlight or soapbox they can find label others as attention-seekers?

Isn't it funny that these people call others narcissistic while simultaneously saying others don't deserve the same constitutional rights as they have?

Isn't that funny?

It's not funny. It's idiotic.

Yet you expect to be taken seriously.

Now that's funny.

Saturday, February 11, 2017

Education Matters

A few days ago, I wrote a Senator concerning the Secretary of Education nominee.

I received a response today.


Dear Ms. Bosarge:

Thank you for your recent correspondence regarding Presidential appointments.

On February 7, 2017, the Senate confirmed Betsy DeVos as the Secretary of Education by a vote of 51-50.

I take seriously the advice and consent responsibilities the Constitution entrusts to the Senate.  Prior to her confirmation, I met with Secretary DeVos, and she reaffirmed her commitment to support public education and rural schools.  I will continue to work with the U.S. Department of Education to support programs that benefit Mississippi children and to return more control over educational policies to state and local officials.

Having the benefit of your views is important to me.  I appreciate your taking the time to write.


United States Senator


My concern is that someone with zero credentials will be in charge of the education of our country's young people. I rarely write Congress, but this is one I could not ignore. They seem adamant about ditching the feds and giving control of education to the states and local districts. The problem with that is that some of those places fail. We've seen that with the probation of school districts and college embezzlement scandals, and there are plenty of other examples out there. Federal support is vital in everything from tuition and financial aid to building security and infrastructure to food and book costs. It makes a direct impact on students. I can tell you personally that I attended a college after they lost federal funding, and it was a train wreck; absolutely rock bottom, and I transferred elsewhere after the first semester. When accountability isn't taken seriously, bad or lazy people do bad or lazy things, and when those people run schools, students suffer as a result. Federal funding and guidelines are there to protect the quality of education, not to harm it. They recognize when schools are failing and hold them accountable to bring them back up to par for the sake of the kids. Who is going to address these issues when they inevitably arise again? Unless all states get their crap together and hold every school district accountable, giving all students equal access to quality public education, a lot of people are going to fall short of average intelligence and opportunity, which gives them little hope of operating at their full potential. Poor education = poverty, desperation, and crime. When education is inadequate, society is inadequate. That's not a partisan opinion. That's common sense.

The confirmation of DeVos is a potential disaster for fair and equal education. All young people in this country deserve the best chance possible at making it in life. I hope and pray they aren't thrown under the school bus.

Wednesday, February 8, 2017

Searching for Sanity

It's safe to say, for many of us, that the year has started off pretty stressful. It got to the point where people were suggesting I back off from social media and the news for the sake of my health. So in January, when I learned that my niece Jo's birthday party theme this year was going to be Pokemon, I decided to learn as much as I could about it. Believe it or not, I didn't exactly know what it was all about. I was a working adult when it debuted 20 years ago, so I've been out of the loop.

Some friends gave me the rundown and a few links, and I am now completely hooked on the online game.

I'm doing pretty well, too.
I'm a level 3 trainer as of yesterday.

It has been a huge distraction...one that I needed. I spend a little less time scrolling down news feeds, which was the plan. I am still feeling stressed, but gaming gives me something different to focus on for a little while.

I also stayed up all night last night, borrowed my sister's NF, and marathoned.

Wow, what an incredible series. I laughed, cried, and gagged. I could barely eat breakfast this morning because it grossed me out so much. I'm not into horror, but this falls into the Sci-Fi drama genre, which I love. I watched it from beginning to end without a break...totally worth all of the hype.

I have a lot of other shows to watch, mostly in the DC and Marvel comic universe. My friends go on and on about them, and I don't know what they're talking about, so I'm going to eventually dive in.

Doctor Who FINALLY returns in April, so I'm looking forward to that this year as well. Whatever keeps the sanity intact, folks.

I have several art projects to work on when my arms are feeling up to it. Winter is always a rough time for my muscles. Even the mild winters we have here affect my motor skills greatly. I honestly don't know how anyone north of me with HKPP survives. My heart goes out to them, that's for sure.

I've got a long nap calling my name. Talk to you soon.