Penn Diet Success Inspiration

Penn & TellerPenn (yes of Penn and Teller, the magicians fame) has recent dropped over 100 pounds on a diet of eating healthy.  The whole story was he was feeling terrible and on five medications for high blood pressure.  Doctor made some small remark about loosing 30 pounds would make it much easier to manage and a 100 (or whatever it was) maybe no medications at all.  That inspired him. Continue reading “Penn Diet Success Inspiration”

ALS Challenge

ALS Awareness

I was recently challenged to the ALS Ice Bucket Challenge.  I had, before that time had a conversation with a good friend about someone else ice challenge where instead of using a bucket, they had dunked themselves in a tub of water with a good amount of ice.  I thought that would be a fairly unique way to complete mine as well.  What follows is the videos of that act in progress.  Note, I have already shared two of these on face book, but managed to find/get the first one that shows the amount of ice that was started with and just how warm it was and how rapidly the ice was melting.

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New Year Revolutions, er, Resolutions

Vive La RevolutionAs it is that time of year once again I am pondering about my resolutions for the year coming up as I say good-bye to the year that has been. I realize that for the past year, I have not done so great on previous resolutions. So, I say revolutions above kind of tongue in cheek and playing off the recent AT&T commercial, but I also fully realize that most of my current resolutions are really going to be revolutionary in nature. So, without more chatter, I will get going with the New Year and the promise going forward of accomplishing things this year on a grander scale.

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10 Week Challenge

ChallengesA departure from my normal technical reviews and ideas. The last month or two I have been really bad about my eating and further have made things worse by not getting in the exercise that I should be doing. I saw that Tera Costa (of Biggest Loser fame) is doing a 10 week challenge to get fit and such between now and the holidays. I am going to do the same and challenge everyone else who is interested to do the same.  10 weeks from now is basically Thanksgiving, but a push from there will keep it going through the holidays. Continue reading “10 Week Challenge”

Health Care Cost

Knee JointHeard an interesting thing on the radio the other day about the comparison of health care cost in the United Sates versus that of other places world that are also considered tier one countries. I knew the results would show higher cost in our grand country, but I did not realize until this piece was done just how much difference it was. I apologize in advance for forgetting the details, but I recall it was on NPR and the lady presenting the facts was doing a year-long “Health Care Cost” piece for one of the major daily papers. Continue reading “Health Care Cost”

Mediterranean Easy Chicken Bread

Mediterranian Chicken Bread
Photo by Ray, licensed under the Creative Commons. Feel free to use, but try to give credit back.

I saw a recipe in a quick glance somewhere mid-week the week before last.  It sounded pretty good and I thought I would give a try with it.  Of course it was shrimp and clam based and I of course could not find it for anything the day before the grocery shopping and farmers market.  So, going off completely on my own, the following is roughly what I came up with as my approximate replacement using chicken instead of seafood, because that was the meat that I had available.  I will try it again sometime soonish with shrimp instead, and I will try to make sure that I let everyone know how it comes out.  On the general idea and somewhat recipe you can give a try if you want to recreate something close to what I had, along with some suggestions and ideas.

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Bourbon, Blues, & Horses

Bourbon BlueBourbon, blues – bet you were thinking I was going to say something about New Orleans? Nah, I got the blues tonight and in what is, I am sure, a spiral deeper into such things, I have compounded the matter with a bit of bourbon. Well, okay, a bit is probably in most folks accounting of such things an understatement. So what does any of this have to do with horses? Well, that is what this entry is about and relates to so many things included medieval reenacting and jousting, clearly the horses, and coping with having MS in my life, so read onward… Continue reading “Bourbon, Blues, & Horses”

Jousting & Horses with MS?

Jousting PassWow, how time flies sometimes. I had been putting off writing this blog entry for a bit because I was not really sure I wanted to write it. Fundamentally, I suppose, by it to words it confirms what I likely already know in my head, if that makes sense to anyone. To explain, I guess I have to back up a little bit for those folks that do not already know me. One of my big hobbies over the last ten or more years has been doing things with horses. That includes anything from light trail riding, breeding some when I had the full farm, lots of training (both them and myself), and of course doing medieval things for show and pleasure. By medieval things I mean anything from a light demo in costume of what squires did to train up to full tilt jousting. The question I have now is can I still do any of this and if so, what parts? Continue reading “Jousting & Horses with MS?”

Gilenya

GilenyaGilenya is the name of the medication I am taking for my MS. It is the only MS medication that is offered in an oral form, as most of the medications are made of proteins and such that require injection to get past the digestive track of our body. It is a relative newcomer to the game, having only been out of clinical trials for a few years. On choosing the medication, well, my neurologists let me do some reading on things and then along with my feedback this is what selected for me. I must note, that this feedback of my input really does make an impact in my mind in regards to what kind of Doctor is best for me.

In considering the medication there was really two that were strongly being considered by the Doctor, the second being one of injections (clearly) called Rebif. My exploration and research into the two drugs indicates a couple of common things. First, at least as far as what I have been able to read, they both are not truly understood in how they work. There is a lot of suggestion and even some science that would tend to back some suggestions, but it is not conclusive. I suppose that is to be expected given that there is not a clear understanding of what causes MS to begin or even a total and complete understanding of how it goes about doing what it does.

A second big commonality is the cost. Let me just say that right now I am very thankful for having pretty good insurance through my employer, even if my amount that I pay into the thing has steadily gone up by double-digit rates over the last several years. I have still not found an actual amount on the Rebif, but based on some numbers I have seen I believe it would be in the $2500-3000 range for a monthly dosage to purchase outright. The Gilenya, if you can believe it, without any kind of support would actually be $4000 monthly. Amazingly that works out to $142.00 per pill.

Now I understand that drug research is expensive and there is a limited time between when a drug is first approved and it can be copied in a generic form. However, this is beyond the ridiculous in expense and markup. It is even more so given that it is not a disease or drug that anyone chooses, but rather something that strikes randomly and is a pain the behind end with which to deal. Keeping in mind that MS does often lead to disability, I think about the mess we call Medicaid and Medicare and it no wonder with these kind of tactics that the system is broke, both not working and in regards to money. Thank about it, to purchase this medication straight out you would have to clear $48000 year above and beyond what your living expenses are. Keep in mind the average annual household in 2006 was just over $50000 and that the average one person in the household was closer to $26000. Basic math says things are totally unsustainable in such a fashion.

It is things like this that make me, against my more general tendencies, think that social healthcare systems might be a better option that what we have currently. Of course that is a rant of a different color and not where I was wanting to go today. I am still not sure at this point how things are working out with my insurance and what amount is being covered. I have gotten several different numbers over the past month while getting everything set up and started. I am sure in the coming few weeks I will have a much more accurate picture, but I know they are covering a large percentage of this drug expense at this time.

That is good at this point, leaves me with the bigger worries right of getting into the regular habit of taking a daily medication. As of this time I have not missed any daily dosages but it has been somewhat a sporadic schedule of when I have taking the things during the day while I am trying to recall and work it into my regular routine. I would not think this would be so hard, having been on penicillin twice a day from the time I was ten until about eighteen, but given over twenty years in between it is a habit that hard to get reformed.

** – Gilenya image from Gilenya website.

*** – Originally published on MyLifeMS.com, July 1, 2011.