Thursday, December 13, 2012

The Women in My Home

If you didn't know, I am not the person in my family with the most health issues.  That distinction belongs to my daughter.  My daughter was born the same year I was officially diagnosed (my son was born the year my symptoms began).  When she was born, we were expecting a healthy baby girl (we found out she was a girl beforehand) and I was not taking any medications at that time.  Needless to say, the moment she was born, we knew we were in for it.  However, we actually had no clue.

My daughter was born with a cleft lip.  While immediately noticeable, it ended up being one of the smallest issues we've dealt with over the past six years.  She had heart surgery at 10 days old to fix a PDA, had surgery again at one month old to get a mic-key feeding tube and fundoplication, had two surgeries at 5-6 months old to redo the fundoplication and get a tracheotomy inserted due to a laryngomalacia and tracheomalacia, and surgery at 8 months old to fix her cleft lip.  The trach and feeding tubes were removed when she was four years old.  She is also deaf in her left ear, hard of hearing in her right ear (aided to normal with a hearing aid), has coloboma's in both eyes and is missing her semi-circular canals in both ears.  Besides this, she broke her neck last month, again due to a congenital issue.  Needless to say, my daughter deals with a LOT.   Yet, she is in a mainstream Kindergarten and is doing work appropriate to her grade level.

My wife is a stay at home mom, who has not only taken care of our daughter, but has ensured that she has thrived.  My daughter is a very special girl with an amazing attitude.  If you doubt me, you can ask any of her therapists and teachers who not only are amazed by the progress she shows every year, but her work attitude and desire to succeed.  But, I will say, if not for the mama bear of a mother she would not be doing as well as she is.  Also, in the past six years, my wife has started a foundation at my children's elementary school which has raised over $50k in its first two years, run a multitude of half marathons, finished a half-ironman, became a great cook and pushed my ass to workout countless times.

This week, my daughter's halo came off at the doctor after wearing it for eight weeks.  She will now be in a neck brace for an additional 7 weeks and then will probably wear a neck collar for a little while after that.  She should make a great recovery.  The night it came off, my wife commented that our daughter is her hero.  I would venture my wife is my daughter's hero.

In my opinion, they're both incredible and I'm lucky to have them both in my life.

Tuesday, December 4, 2012

Jon Stewart nails Fox on the "War on Christmas"

As a Jew in the US, the idea of a War on Christmas just seems ridiculous to me.  The fact is, I had to tell my kids to lie to their friends and just keep their mouths shut when they mention Santa Claus.  I don't like having to tell my kids to lie for you, but it's the right thing to do for other reasons.

However, Jon Stewart nailed it this year in the annual mocking of Fox News' War on Christmas.  Two of my favorite parts of the show:

  1. On the proliferance of Christmas specials, there's even a Flinstone's Christmas special, Stewart pointed out, meaning "there’s a Christmas special celebrating Jesus’ birth thousands of years before the birth of Jesus."
  2. On Bill O'Reilly's argument that Christianity is not a religion, but a philosophy, Stewart replied, "While I can get an A in Jesus' philosophy class, I don't get to go to the after party

How OptumRX legally screwed me out of $150

I take a number of drugs for Parkinson's.  One of those drugs is Requip XL (Ropinerole ER).  This drug is the same as the drug Requip (Ropinerole), except it has a time release capability which means the drug company that created it, could keep it from going generic, longer.  The advantage of taking the time release version is that you get a little bit of the drug over the whole day as opposed to large doses that taper off.  The good news is that the drug just went generic.  The bad news is that my prescription plan through UHC has not yet approved it for generic pricing.

Nevertheless, my pharmacy, OptumRX, in their infinite wisdom as a generic pharmacy sent me the generic version of the drug.  They also charged me the same rate as it would have cost if I they had sent me the brand name of the drug.  I called them and asked since I was paying brand name prices, I wanted the brand name drug.  They basically said, tough.  They sent it out and there was no indication on the prescription to fill as ordered instead of using a generic version of the drug.

Now understand this, I would prefer to have the generic version of the drug, but for generic prices.  The fact that I called them immediately upon receiving the medication and they did not call me back is indicative that they knew what they were doing.  I called back a few weeks later, and after discussing with a customer service representative and her supervisor, I asked to talk to the pharmacist who was in charge of making the decision.  I was told by the supervisor that the pharmacist would not speak to me and the decision was final.

The problem is, I have no recourse and the pharmacy knows this.  They are the only mail order prescription service that my health plan uses and they are on the whole much less expensive then going to the local drug store.  Nevertheless, I will probably be transferring this prescription to a local drug store, because then I will be able to see what I am receiving and quickly be able to determine whether the generic brand has been accepted by my health plan and the price will go down.

For reference, my plan offers Tier III drugs such as Requip XL for $170 for a three month supply, while a generic brand will cost $20.

Monday, December 3, 2012

Pledge to get Active

And now for something, somewhat different....

I mentioned in my last post, my wife wants me to sign up for a swim race/event.  After the post and the positive response I got from a number of people, I decided that I thought the idea of doing a race is a great one.  However, the more I thought about it, the more I thought that this would also be a great way to challenge others.  So, I'm putting my legs and arms where my mouth is and challenging everyone in the Parkinson's community to sign up for a race.

I don't care if it's a 5K, a marathon, a bicycle ride, a long swim or something completely different like a dance marathon.  The only condition, is that it has to be a distance/length/time that you have either never done before and/or that you have to keep up your training level to be able to finish.  If you've never done a 5k, sign up for one.  If you feel you cannot run one, walk one.  It doesn't have to be a Parkinson's related race and you don't have to raise money for Parkinson's as part of your training.  This is something for you and your health, because everything I've seen is that the best thing you can do for yourself in order to slow the progression is get active.

I'm not even swimming a mile yet, so I have not yet decided on whether to swim the full 2.4 mile race or just the 1.2 mile race.  However, I am pledging that I will be swimming at the Oceanside Tiki swim in September of 2013.  Currently, the website does not have next year's registration and/or event information for next year.

Nevertheless, considering we are coming up on a New Year, this is the perfect opportunity to make a New Year's resolution to get active.  Do it and I'm sure you will feel better.  Active means getting up and moving.  Just pledge to do something more and something measurable (can you tell I'm an engineer).

Leave a comment if you plan to sign up for something or have already pledged to do an activity.  Remember, this is in your own best interest.  So be selfish and get active.