CT scan Wednesday

Insurance precertification in hand, Shawn has a CT scan this Wednesday, along with some more blood tests.

waiting for insurance approval

There is so much I don't understand about the objections I hear about the current health reform bill.  But the thing I completely don't understand is when people say that they don't want the government making health care decisions for them.  I suppose that when people say that, they think that the alternative is that they themselves are the ones who should make these decisions.  And I guess that they must think that is what happens today.

I'm here to tell you otherwise.  When it comes to an expensive treatment or test, the one in charge of making decisions today is not the patient.  It's the insurance company.

A few weeks ago, Shawn was dehydrated, and many of his labs were elevated, including his calcium level. After modifying his medicine (dropping the most recently added diuretic) the dehydration and most of the lab results improved but his calcium level was higher rather than lower.  The sustained hypercalcemia has led Shawn's doctors to look at some other conditions not previously considered.  But when his doctor tried to schedule a CT scan, the insurance company requested more information before they would approve.  So we are now waiting for the insurance company before the next round of tests can be scheduled.

I see nothing in this current bill that will change this.  So I don't understand the argument of "I don't want the government making decisions for me."  In fact, the only decision the government will be making in this new bill is that everyone will have insurance coverage in the first place.  Then the insurance company gets to decide just like they do today.

And if the doctor and/or patient don't like the insurance company's decision, what can they do?  Well, they can sue the insurance company which puts it in the hands of, uhm,  the government.  That's not new, and also won't be changed by the health care reform.

But what is new is that the insurance company can't decide to just drop the individual when they determine that they are spending too much money on them.  And they can't decline to cover someone.  In our case, that is worth quite a lot.

How about some GREAT NEWS for a change?

SHAWN'S FIRST PUBLISHED SONG JUST HIT iTUNES!!!  Ridin' On The Rim - track # 6 on Heartsfield's new album "Here I Am".  

Not only did he write this song, he also sings on the track - he is the first voice you hear on at the beginning of each verse.    

He wrote this song about 4 years ago, when he was in high school, in the summer between his junior and senior year. The night before we were leaving to go to New Jersey,  there was a truck driving by, and someone said it sounded like it was riding on the rim.  He liked the phrase, and started writing.  He first performed it the next day for my parents and grandmother.  When he got to the 2nd verse, he stopped and said "you'll like this, Poppa," then proceded singing the phrase "my girlfriend finds a way to spend all my money."  

He recorded this song a few years later, before going back to his sophomore year of college.  The person who recorded it thought that a producer friend of his would like it.  It turns out this friend was in the process of putting together a new album for Heartsfield.   And that's how Ridin' On The Rim made it to Heartsfield's album "Here I Am."  A big thanks to Craig for starting the wheels of this particular truck in motion!

So go take a listen, buy the song, rate it on iTunes, and tell all your friends!!!

Or, if you prefer, here's the link to the CDBaby distribution of the album.  

Thank You, President Obama

As someone who has experienced first hand the issues that surround insurance of dependents who are not full time students, let me tell you this is HUGE.  We had a brief glimpse of this last year, when IL passed a law requiring insurance policies to insure all dependents under 26, but there were a few loopholes - one for self-insured companies (which IBM was) and a second one for policies written outside of the state of IL (which my new company's insurance policy is).  But now the law is a national one and I can once again insure Shawn without having to worry about how many hours of classes he feels he can handle. (Which has not been full time since his first semester of college.) 


I was working earlier and didn't watch the signing, but I just read Obama's speech.  I have to admit I cried.  I also became a co-signer of the bill - which you can do too by clicking here. 

the state of things...post by Shawn

Seeing as I usually post the medical facts and not much more, I decided I'd explain how things are going. To get these out of the way, I'll go into the less-than-great aspects of this journey. Recently, my nausea has been pretty awful so on top of taking anti-nausea medications every day, I still have a difficult time getting myself to eat. Therefore, my weight has been tumbling off and at this point, I'm below what I weighed in High School (however, that's better than before where I gained a lot of weight). Also, because my muscles have shrunk considerably, I exacerbated an old knee injury and now am walking on a knee full of shredded cartilage and other stuff. Furthermore, my energy levels are extremely low and make it difficult to do everything I need to in a day. Finally, my blood pressure surges over the past few years have been damaging my heart to the point that my heart is enlarged and weaker than before.

However, those who know me know I'm not a negative person and I have found ways the past few years to find the good in all of this. While I know I can't control the wildly fluctuating blood pressure, I can help my cardiac function by keeping a VERY STRICT low sodium and low fat diet. That means I've been staying away from red meat, butter, cheese, milk, bread, etc. I have found that this diet has been helping me to feel a little more energetic. I have tried to attend classes as much as possible this semester and keep up with my school work along with teaching at Edgewood High School (go mustangs!) and teaching at the religious school. I have been able to do these things with some regularity except for the days that I feel worse than usual. And, I have a great group of friends, supportive family, and Arie who have all stuck by me through the countless tests, procedures, surgeries, treatments, etc.

People keep asking me how I am and I'm not sure how to answer that question. I feel like when I tell them I'm doing well, they take that to mean that I feel well, which is not true. Truthfully, I haven't gone a day without pain, nausea, fatigue, etc., in years and have trouble remembering what those feel like. However, I'm doing well IN SPITE of all of this. I'm finding things to do that make me happy, I'm teaching, and I'm spending time with family and friends.

I taught a lesson last week on optimism and one of my students had a great response to what true optimism is. She said that optimism isn't impressive or completely real when everything is going well in your life. Impressive optimism is being able to see the good in things in spite of all of the negative in your life. In my opinion, optimism is vital to making it through any illness and I refuse to let mine go so I guess I'm doing pretty well.

New Meds

Shuffling around of medication yet again... here's Shawn trying to figure out which is which.  For those keeping score, he has 6 different drugs for blood pressure, 1 for headaches, 1 for nausea, and at the moment amoxicillian for a sinus infection.

On Wednesday we saw his doctor at the U of C hypertension clinic, he dropped two of the blood pressure medications and added in two new ones.  This makes the new set of blood pressure meds the following:

Morning	Evening
Toprol XL 100mg	Diltiazem CD 240mg
Nifedipine XL 30mg	Dibenzyline 20mg
Tecturna 300-25mg	Clonidine .2mg
Dibenzyline 20mg
Clonidine .2 mg

Add to that daily medication for nausea, another one for headaches, and for a few more days, antibiotics for a sinus infection.  Not sure why he doesn't rattle around when he walks.  

wait for COBRA letter is finally over

Last week, I called to cancel Shawn's COBRA policy from my former employer, so that he could go on the new COBRA policy starting on March 1.  But it turns out I couldn't cancel -- it was his policy so he needed to call.  The person I talked to said Shawn would need to call and enter his social security number, not mine, in the menu of prompts you hear when you call.  So I called him and told him what to do.  Ten minutes later he called back and said that after going through all the phone menus to get to a person, they said they would need MY social security number as well, which of course he didn't have... so he had to call me, get the number, and call them back, going through the phone menus all over again. (These are nothing compared to Comcast, which I've blogged about before. Still, before reaching a person you have to enter 5 or 6 different pieces of information and get transferred at least once.)   So armed with my social security number, he dialed, entered all the information, and successfully cancelled his policy before having to pay for another month. 

Step two is to sign up for the new COBRA, which we can't do until I receive the letter from HR.  But they can't send out the letter saying he is eligible until the day he is no longer covered - which was March 1, this past Monday. I figured it would take a few days to reach me so I was expecting to get the letter Wednesday or Thursday.  Each day, as soon as the mail came, I eagerly searched for the letter.  Nothing on Wednesday.  Slight apprehension now but I figured surely it would be there on Thursday.  But no, Thursday mail arrives and still no letter.  Now I start to worry so I called HR.  A very nice woman who has been helping me assured me that the letter "should have been sent on Monday" and that she would double check.  She later contacted me and verified it was sent.    

Finally, today's mail arrives and there is the COBRA packet.  I filled it out and sent a scanned copy back to HR within an hour of receiving it. And I am about to head to the post office to send the paper copy along with the first check. I hope it gets processed in time for his next doctor appointments the week after next, as well as in time for him to refill this month's prescriptions.