Tuesday, September 7, 2010

Government Intelligence - A Proven Oxymoron

That headline caught your attention, didn't it? I thought so.

Today, I would like to talk with you about our delightful new health care reform.

I have medical power of attorney for my 21-year-old step-daughter, so that I can negotiate her bills, etc., and make calls for her treatment. We set this up after she was released from a very extended stay in the hospital. 28 days in ICU, a total of 34 days in the hospital. The long and short of it: Gall stones and sludge led to Severe Acute Necrotizing Pancreatitis with sepsis and respiratory failure. It was a very touch and go time. During the entire duration of her treatment, I was legally unable to authorize anything. Her biological mother and father were the persons authorized, because the medical POA was not signed before she ended up sedated and intubated. Despite the fact that both persons called me and asked me what they should do in regards to the latest emergency that had developed during her rapid downhill slide, it still had to be one of those two who actually said yes or no to the doctors. The only reason the doctors or nurses could tell me anything was because I had been told what the PIN number was (the hospital assigns PIN numbers to patients. If the caller has the PIN, they had to have received it from an authorized source, therefore, they are allowed to speak about the case).

I'm rambling. Back on target.

I take my responsibilities seriously. Regardless of the fact that E is now conscious and able to make these decisions, and she has the ability to research and make arrangements, I am doing those things. Why? Because 1-if I leave it to her, it won't get done (she's young--what else is new?), and 2-if she actually *did* research, I would still have to look it all over to explain it to her. Let's face it, folks. Kids today are just not prepared for reality. No matter how much we have worked on trying to make sure they understand all the steps they need to take, how we train them to visualize a goal, and then follow each step to reach that goal, I still find myself being constantly questioned by my 3 adult step-children because they are just clueless.

So, since we are currently looking at $330,000 (and counting) in medical bills, and it does not look as if Medicaid is going to come through for E, I started looking into inexpensive insurance policies. After all, since she isn't working, the only way the girl is going to stay out of the hospital is if *someone* (cough-me-cough) ends up paying out of pocket for all of her diabetic supplies. Now, if she had gotten sick before she turned 21, we wouldn't still be waiting for Medicaid to respond. Coverage under age 21 is pretty much a given. But after 21, if the sickness does not disable you, and Diabetes Type 1 is not disabling unless it is uncontrolled, then Medicaid is not likely to come through.

Rambling again. I tend to do that. I'm sure you've figured that out by now.

So, in the delightful state of Michigan, there are some public policies available. I looked at Blue Cross Blue Shield of Michigan, which has a nice "Young Adult" plan. Prices start at around $50 a month. That's a heck of a lot more doable than the over $200 a month for supplies, right? Sure... except in looking at what is covered, the list is practically NOTHING! Regular doctor appointments? Not covered. Preventive medicine, like annual exams? Not covered. Prescriptions? Reduced price.

I'm sorry. What is the point of having 'insurance' for which you still have to pay out of pocket for everything? How is that 'insurance'?

And our intellectuals whom we elected into office have now passed regulations that, by 2014, will make it illegal to live without health insurance. Illegal, folks. Starting with a $95 fine, and working up to around $200 fine every time you are found to not having insurance.

How is this going to help? It is illegal to drive without insurance. People do it all the time, as is evidenced by our court records. My own brother drove on a suspended license enough that he has now had his license revoked.

First off, this is just one more step to criminalizing the poor. People don't go without health insurance because they WANT to. People go without health insurance because they cannot afford the costs. Making it illegal to go without insurance is only going to serve to make those costs that much more, because the public will no longer have a choice. They will HAVE to buy it, despite the cost.

What happens when it comes down to being able to pay their rent, or buy food, or pay for their legally required insurance. Because of the way Medicaid rules are written, if the person is of age and physically able to work, even if they have applied to every job in every business, and still not hired, they still have to buy their own insurance. What if they are working part time, making minimum wage? They'll end up insured, just to stay out of court, but they'll end up homeless.

At least, until Congress makes it illegal to be homeless.

Friday, February 26, 2010

Rare Disease Day

February 28 is Rare Disease Day.

Until last year, I never knew such a thing existed. I am happy to say that the governor of Michigan issued a Rare Disease Day proclamation fairly early in the planning stages, whereas some other states are still working on it, and we are down to 2 days away.

I bring this up because I read an article recently that I would like to share with my 'readers' and fellow bloggers. NPS Pharmaceuticals is a company that researches treatments for these rare diseases. Here is the link to their recent announcement. This is interesting reading because one of the two main treatments they are currently concentrating on is for this stupid pain in the butt ailment afflicting me. The small, concise description they have listed in this announcement is a better explanation than what I've come up with to date, so if you are curious about Hypoparathyroidism, check out this web page for a short, sweet and to the point description.



Monday, December 28, 2009

Semantics Games

Semantics tend to just piss me off. However, on the other hand, there is a particular semantics game I am starting to play that will hopefully help push me along in my writing.

A couple of weeks ago, my youngest baby--my delightful, little 4th grader--brought home her spelling list and asked for my help. She had to write a story using all of her spelling words. So, I helped get her started. All of a sudden, I had a completely different story rolling around in my head. So, for fun, the oldest girl and I copied down Gator's spelling list, and each of us wrote a short story from that list.

This is also a 'game' posted on one of my favorite fan fiction websites. Potter Place (used to... I haven't paid as much attention lately) posts what they call 'Dictionary Drabbles.' The site owner posts 7 words and their definitions and asks for short stories to be posted using all of the words. Some of them are fairly obscure, while others are a little more commonplace. It's intriguing seeing what numerous people come up with, which tends to run a large gamut of topics.

Last week, I had an inspiring thought regarding this exercise, and the fact that I have been struggling to post new chapters for the stories I have listed at therabidreader.com.

So, I have decided that once school starts back up again, I am going to get Gator's spelling list each week and use a minimum of 5 of her words in a chapter. It doesn't matter which of the current 4 works in progress I wrote on, as long as I am completing at least 1 chapter each week.

Believe me when I say, this could get very interesting, considering some of the words that child brings home.

However, this should guarantee that I will get a few stories finished faster than what I have in the past. And, if I'm really industrious, I can grab the next 5 words and write a second chapter.

Sounds inspiring to me. It'll be nice to start seeing some of these partials become complete stories.


Tuesday, December 22, 2009

Playing the Numbers

This is a repost from my FaceBook account.

A fellow HPTH patient recently got some of the best news in the world. In return, this patient has actually received hate mail and been de-friended because something good happened to her. People have called her undeserving. One person even went so far as to say that because she was surgically-induced, rather than idiopathic, that her success didn't count for anything.

Personally, I find such behavior reprehensible. Begrudging someone who has suffered for 14 years just because something finally went right... that is just appalling.

So, I felt the need to ramble about a few numbers. If Non-surgical were the only HPTH patients...

With surgical-onset, the odds of becoming HypoParaTHyroid are 1 in 2,500.

Without surgical onset, it is 1% of 1 in 2,500... or 1 in 250,000!!!

Just how many doctors would have any interest in something that only strikes 4 people per million?

I did that math with my kids the other day.
As of the last census, there are almost 305 million people in the US.
That means that there are a total of 122,000 patients in the US who are HPTH.
Of those, only 1,220 are NON-surgical HPTH patients.
Assuming an even split among all 50 states, that comes down to less than 25 HPTH non-surgical patients PER STATE.
Look at the size of California or Texas. Only 25 non-surgical patients in those states?
And, non-surgical has multiple classifications: idiopathic, auto-immune, and congenital. Take that less than 25 per state and split it among three separate causes. Just what kind of odds are you looking at now?

It's hard enough to find a good endocrinologist, from what I've read. If it weren't for surgical patients, we would be lucky to find a competent doctor within a 4-state radius.

Just because someone's surgeon slipped up to cause their disorder, instead of having their body turn against them and just start to shut down, does not mean they suffer less. If anything, they suffer harder. Whereas those of us (myself included) who are idiopathic are more likely to deal with a gradual decrease of parathyroid hormone, those surgically-induced patients most often have to deal with sudden loss. They go from 60 to zero overnight.

I am not attempting to belittle any person's feelings. Anyone who has suffered through a long-term illness or injury understands how sometimes it does hurt to see that someone else find an unusual success that as of yet may or may not be able to be duplicated. But to turn your back on that person, to belittle her right to receive treatment?

If I had any faith in the human race as a whole, I would be surprised by this behavior. However, working in the media, one can easily see the extreme lows and depravity to which people will stretch. Therefore, sadly, I cannot even call this behavior 'unbelievable.' It is still reprehensible, though.

Congratulations, girl. Your success restores hope in my heart that something conclusive may be found yet in my lifetime, stopping the 'fact' that this disease/condition will lead to disability. And hope is a very powerful feeling.

A footnote to this information, providing sources, correlations, and/or corrections to said information. ... because playing Devil's Advocate is a pain. All sources are medically and governmentally accepted as reliable sources.

Source: CMJ.org
An epidemiologic survey conducted in Japan showed the prevalence rate of hypoparathyroidism and pseudohypoparathyroidism as (5.5–8.8)/million and (2.6–4.2)/million, respectively.

The incidences of idiopathic hypoparathyroidism and pseudohypoparathyroidism (PHP) have not been determined in the United States. Rates following surgical procedures such as thyroidectomy vary depending on the extent of the surgery and experience of the surgeon.

Source: WrongDiagnosis.com
Hypoparathyroidism is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Hypoparathyroidism, or a subtype of Hypoparathyroidism, affects less than 200,000 people in the US population.

Taking the above information into account and using the maximum number for the US as stated by the ORD and NIH, the following notations can be taken into account:

The odds of becoming HPTH are a possible maximum prevalence rate of 1 in 1,525.
NON-surgical onset occurs in only 1% of HPTH cases ... or 1 in 152,500. (source: Parathyroid.com
Deficient Parathyroid Hormone Secretion. * * * This type of hypoparathyroidism is the easiest to understand, and it accounts for more than 99% of ALL patients with too little parathyroid hormone. ... The reason that there is too little parathyroid tissues is because all of the parathyroid glands were (unintentionally!) removed at the time of surgery. ... Deficient PTH secretion without a defined cause (e.g. surgical injury) is termed Idiopathic hypoparathyroidism. This disease is rare and can be congenital or acquired later in life. This is a very rare form of a very rare disease!!

Non-surgical HPTH only strikes a maximum possible 6 people per million?

As of the last census, there are just over 304 million people in the US. (source: the US Census Bureau)
based on the above mentioned statistical maximum of 200,000 patients in the US who are HPTH.
Of those, only 2,000 are NON-surgical HPTH patients.
Assuming an even split among all 50 states, that comes down to less than 40 HPTH non-surgical patients PER STATE.
While this number is higher, this is shown to be the maximum according to the 'powers that be'. Only 40 non-surgical patients per state.

Monday, October 12, 2009

What's in a name?

I had a lovely conversation with a friend from across the country recently. I found his email to be spectacularly entertaining, and I thought it would be fun to share on here.

Is it just me, or does the following strike you as The Worst Product Name in History?

I was listening to NPR while cooking, as I sometimes do. At some point they mentioned that the preceding show was sponsored in part by--and here it is, The Most Disgusting Product Name Ever--an herbal laxative tea someone thought would be a good idea to call Smooth Move.

In my experience many herbal teas, once steeped, turn a distinctly brownish hue. Now why, in the name of all that is holy, would anyone name a product which promises loose bowl movements, a most-likely brownish liquid, intended for oral consumption, Smooth Move? Who in their right mind would part lips and swallow Smooth Move in hopes of same?

In case I'd misheard, or it was some type of joke, I Googled and as you can see the stuff really exists.

Fasten your Depends, there'll be a Smooth Move tonight.

Now, drink up.

PS. I created the above tagline. Think they might use it?

Saturday, October 3, 2009

Hell hath no fury...

I love living in the middle of nowhere. If we have a party at our house, I don't have to worry about the neighbors complaining about the noise. Actually, to be truthful, it's more of a competition of who has the loudest music. I have the grace of my 'neighbors' (about a 1/4 - 1/2 mile away) being youthful enough to appreciate the joy of having parties.

The mind doth wander again...

Recently, I had a letter to the editor published in our local paper. I won't bother expounding on it, as it does a good enough job explaining things. I thought this letter would serve as a decent enough post that I want to include it here. I have edited it only in the regard of removing the phone number, as I don't feel that needs to be publicized on the internet. However, everything else is exactly as it published in the paper.

And now, without further ado:

My children are far from innocent. I’m not one of those delusional mothers who believes her child can do and has done no wrong. They’re kids. They make mistakes. They make bad choices.

On Sept. 17, my son played at a neighbor’s house.

We live in the middle nowhere, which means there aren’t really any kids his age nearby.

Our road had recently been pea-graveled. Being immature, like a 13-year-old with severe ADHD can be, my son, in his infinite boredom, starting throwing the pea gravel. He threw some at a passing truck for which he has been punished. From what I under­stand, it hit the man’s tires.

The driver, rather than acting like an adult, finding the child’s parents and speaking to them about the problem, decided it was in his best interest to tell my child that if he saw him on the road again, he would run him over with his truck. The driver actually felt it necessary to physically injure a child over a possible chip in the paint of his truck. Is this really what we have come to as a society?

I’ve had windshields cracked due to stones thrown from passing cars. I’m not going to run that car off the road and try to kill the driver. If the paint job on the truck was that important, why are you driving on pea gravel to begin with? If your truck is more impor­tant than human life, I’m amazed you can bring your­self to drive it, instead of hiding it in a garage where it cannot be damaged. If the sun fades the paint, are you going to try to remove it from existence?

To the driver, if you feel you deserve compensation to repair whatever damage my child may have done to your vehicle, call me at XXXXXXX. A meeting can be arranged. If you decide to follow through with your threat of running my child over, remember: if you think hell hath no fury like a woman scorned, try ra­tionalizing with a mother whose child has been in­tentionally injured.

Friday, August 21, 2009

Spread your wings and fly...

There are many aspects of parenting that are joyful beyond belief, and many that cause untold anxiety issues. Empty nesting, I would have to say falls somewhere in the middle of that spectrum. As a mother and step-mother of 5 ranging in ages from 9 to 22, we have the full gamut of events, from losing their first teeth, getting their first glasses, and hitting puberty, all the way to getting their first apartments, graduating college, starting college, and being on-call for military service.

The oldest 3 are not my biological babies, but I've raised them since they were 6, 8 & 11. For all intents and purposes, they are mine. Their biological mother has even told them to view me as the mom and her as a 'friend.' I'll not post my thoughts on that topic, as that is a whole separate wandering of my minds.

The oldest has not lived at home for the last 3 years. He moved in with some friends at the same time that my mother moved in with us after my father died. Since there were still 7 people in our house, and he came around regularly, I did not face those growing pains then. Even when he went off to college, he was only 3 hours away. In Michigan, and in a family of travelers, 3 hours is little more than a jaunt. If something were to happen, I could be there in reasonable time. And if it were an emergency, that 3 hours became 2 (with the aid of a lead foot and a radar detector). Sometimes we get there unnoticed by authorities. Others, we were not so lucky. But the ticket was worth it if I got to my child fast. I'm wandering...

Then he joined the National Guard and left for basic training. 6 & 8 states away, yet I still did not feel the absence. Of course, I cried every time I dropped him off at school, and I cried when he left for basics. But, he never saw that. I held myself together until he was gone.

Back in May, he moved to Virginia. This time, he saw me cry. He laughed. Children. LOL. He lives about 14 hours away, which is much more than a good stretch of the legs, and not a trip to be made in 1 or even 2 days. He has invited his oldest sister to move down there with him, where he can help her learn to live on her own without having instant culture shock right away. So, we have spent the last 3 months sorting, packing, and deciding what goes and what stays.

I only post this online because I have said as much to my children, but this time, I am almost more nerved up than my daughter. I am beyond nerved up, really. I am terrified. If something happens, I can't be there in a short time to help them figure out how to fix the problem, pick up the pieces and move on. Yes, I'm only a phone call away. And, the joke at our house is that the kids all have to move out before they find us worthy of conversation. So, I know I'll hear from them all the time. I actually expect to hear from E nearly daily for at least the first 2 weeks.

Still, she has never worked outside the house. She's never been very far away from the parental figures. The girl is almost 21 and hasn't even had a first date.

Terrified doesn't even skim the tip of my and her emotional icebergs.

K, #3, moved in with her boyfriend the very night of graduation. The superintendent's annual graduation joke involves seeing suitcases on parents porches on the way to the ceremony. Well, they weren't on the porch, but they were packed. Granted, in the first 2 weeks after she moved out, we knew where she was every minute of every day, and we'd seen and spoken to her more than the entire preceding year. She laughs when I say that, but it's sadly true.

What really drove home the empty nesting sadness was a phone call from J. He'd been injured at work and didn't realize how worker's compensation worked, so he was really flipping out about the bills and whether he would even have an apartment for his sister to live in when we move her down there in a few weeks. That thought spiraled him into many other sad thoughts, and the major fear of failure surfaced hard and fast. By the time I got off the phone, hopefully having re-encouraged him and set him up with fresh ideas how to go forward, I sat down ready to bawl.

I wanted so much to crawl through the phone and wrap my 22-year-old child so tightly in my arms, and just kiss the problem to make it go away. I wanted to reassure him that Mom would take care of everything, and not to worry. But, I couldn't do that, even if he sat in my own living room to tell me his woes. I couldn't be the superwoman I've been for the last almost 12 years. It's no longer my place to fix his problems.

I have to let my children spread their wings and fly, and just pray that we've taught them enough to soar on the up draft, fight the down draft, and store any unused energy for the next fight. It's humbling, to say the least.

I've not slept well in the last few weeks. Partly due to the anxiety of moving E down with J. Partly due to this thudding realization of powerlessness over my babies' fates. Mostly due to the lack of trust in myself at having done a good enough job of mothering to prepare them for the real world.

I faced 2 separate amniocenteses within 1 week with less trepidation than I feel now.

Let's face it. Mom is always the boss. And the boss's job sucks.

Still, as each hurdle is passed, either successfully, or not so much, we get to rejoice that our children at least tried. Even if they fall on their face, they tried. They didn't let their fears hold them back. And that means we did something right.

So, hopefully, once we have E and J settled into their apartment, and I make the long drive home alone... Hopefully, I can rest my head and sleep.

At least until the next phone call. :)

Blessings to all the bosses out there; you need it.