Giving thanks

Today I am so very thankful for all the wonderful people in our lives. Happy Thanksgiving to you all.

new path in this complicated journey

I think the title of this blog is pretty accurate - this has indeed been a journey.  A complicated, twisted one - the path curves around this way and that, sometimes crossing itself and going backwards, so that you are never quite sure what is around the next curve.

A few months ago, Shawn noticed some places that feel like bone growths - hard pebbly like structures that you can see and feel - at various spots on his body.  One on the back of his skull, one on his ankle, a few on his chest bone.  Xrays showed nothing unusual.  This week he had a bone scan, which will light up areas of abnormal bone metabolism.  The scan lit up in two places - the chest, which makes sense since he feels something there, and his right hand.  We aren't sure what to make of this, he's never had any pain in the hand, never seen or felt anything there.  Also not sure what this means for the other two spots that didn't show up on the bone scan. 

Tomorrow he's having an xray of the right hand, and meanwhile his doctor wants to talk to a few other doctors before suggesting what to do next.

Besides the xray tomorrow, Shawn also has an appointment with his neurologist next Thursday.  Dr. C. doesn't like the exaggerated reflexes he sees in Shawn (hyperreflexia).  This has been around for awhile as well, initially the neurologist thought it was Myasthenia.  The neuromuscular specialist we saw didn't think that was likely given the EMG results.

So here we are still twisting this way and that on this complex journey.  

Open enrollment also = $$Expensive

Let me make this very clear: I am quite grateful to have insurance at all, especially for Shawn.  His pharmacy bill alone would be over $600/month right now without insurance.

On the other hand, my new "exciting" options during open enrollment also managed to pack an "exciting" new price tag.  I spent quite a long time trying to figure out what options would make most sense for us, and ended up with a plan very close to what we have right now - all for $400 more a month.

:-(

It feels to me like the insurance company is taking advantage of new healthcare reform to hike up prices.

Open Enrollment = Confusion

Open enrollment.  My HR website says "All new exciting benefits for 2010/2011"  What this really means is "you are about to enter  into a strange murky world of non-intelligible double speak which you have to untangle in order to make the right choice."

The good news is, thanks to the health care bill, I no longer have to worry about Shawn's full-time status at school.  (The kicker is, for the moment he's actually scheduled to be a full-time student for the first time since Freshman year.)  But regardless of his current enrollment, we won't have to start worrying if he ends up dropping a class, so YES, I am still quite thankful for the bill.

The new choices seem straightforward, there is a nice little table with the 8 different policies and key features to compare.  It turns out this table is at best useless.  At worst, perhaps a little misleading.

There is an HDHP (High Deductible Health Plan) choice, which allows you to also establish an HSA (Health Savings Account).  Last year my accountant suggested I look into this type of account, as I spent a considerable amount on medical expenses, but not quite enough to itemize.  The nice thing about an HSA account is you can roll over any money left in it from year to year, and it earns interest tax free.  Money from the account can be used only for medical expenses.  And you can only open one with a corresponding HDHP.  

So on to the HDHP.  The deductibles on this are  $2500 individual/$5000 family.  You might think that means that as soon as a single person (individual) on the plan pays more than $2500 that they have met the deductible.  I would think that as well.  And it seems we would be wrong. 

After spending quite a long time talking with a really nice woman from Aetna - one I have every reason to believe knows what she is talking about - I have learned that the HDHP policy has a different definition of family vs. individual deductible than the PPO policies. 
 
The HDHP policy requires the family deductible to be met if the policy  is a  "family" policy - that is if it covers more than a single person.  The PPO deductible is a per/person amount even for a policy that covers more than a single person.  So under the PPO, Shawn's deductible will be met when he has more than the individual amount of expenses, while under the HDHP it won't be met until the family limit has been met.   This sounds awfully strange to me and possibly I've still got it wrong, but we spent quite a long time talking about this and the representative was pretty specific about it.

Another thing: How you satisify the deductible is different for different plans.  For the PPO, pharmacy costs do not count towards the deductible.  But for the HDHP,  cost of medicine does count towards the deductible.

The nice little table that my HR website has  comparing the plans is pretty much meaningless, since the same language means different things for different policies!   How you meet a deductible is different, which deductible you have to meet is different, what happens once you meet the deductible is different. 

Under the HDHP, you pay full costs for everything until you meet the deductible.  Shawn's monthly pharmacy bill alone will be enough to do this within approximately 8 month, even with no other medical expenses.  So I know we'll meet the deductible, but then I also know we'll blow through all the money in the HSA.  

I started today's call thinking I wanted the HDHP.  Now I'm less sure.   While the HDHP policy is quit a bit cheaper, the HDHP + HSA together are about the same price as one of the PPOs.  And I know I'll use all the money in the HSA, so there will be no chance to roll it over (one of the things that is attractive about an HSA).  Which makes it not that different from the higher premium of the PPO, which is also paid in pre-tax dollars. 

After spending a few hours on this today, I now think I need to delve into the other differences between the HDHP and PPO coverage of individual expenses.  I think I'll be back on the phone again tomorrow with Aetna's customer service. 

And in the meantime if anyone out there has any insights or experience with an HDHP plan (especially Aetna's HDHP) please leave a comment below! 

catching up

It's been a whirlwind of a month... since breaking my foot Shawn and I have been to: Atlanta, Philadelphia, New York City, Atlantic City, Beach Haven (Long Beach Island), Paramus, Beach Haven, Philadelphia, Chicago!  Most of the trip was vacation, with a side trip to a doctor in NY, and the unveiling of my grandmother's gravestone thrown in.

Travel was a little challenging but we made it.  I got a knee scooter and was able to walk/scoot more than five miles when we were in NYC.  It also allowed me to go back and forth to our favorite seafood place while at the beach.  It's not quite as easy as it looks but much easier than crutches.

Shawn's been trying to build up leg muscles and was able to walk quite a bit while at the beach - he has a new crutch that is much more comfortable to use than his cane.

As for the doctor visit, I never really know what to say after seeing a new doctor.  He took lots of blood, said this could be like some of the cases he's seen but wasn't really sure, there were a number of things that didn't really fit - which seems to be a recurring theme.

He did switch medicine around quite a bit.  Said that some of the medicines were obviously not doing much during an episode and that Shawn's body was fighting them during the rest of the time.  Also beta blocker has stopped working once again, as his heart rate was 130 while at the office.  So he switched two medicines, dropped one, and started weaning him off another.  It all sounded great until the day Shawn started switching medicines.  He spent the next day completely wiped out, chest pain and very high blood pressure that lasted hours rather than the normal 20-30 minutes.  This caused the doctor to increase dosage of one of the new medicines and also add in another.  First day of this new one was not fun, about an hour after taking it Shawn was nauseous, not long after that he was throwing up.  Next night he took an anti-nausea medicine before taking it, which completely wiped him out.  Since then he's been taking it right before going to bed which seems to be doing a little better.

The doctor says it will be two weeks before we really know if the new meds are working.  Thus far, doesn't seem to be doing much that's different than before, but we're only a week into the two week period, so I guess we'll see.

Happiness

When we lived in England, one of my favorite memories was after having broken my leg, sitting on my couch and listening to Shawn play guitar and sing.

Now here I am again, broken foot this time.  But even so, I'm sitting here listening to Shawn play piano and sing.  And it occurs to me that as much of a physical and logistic pain the next few weeks will be, right this moment I am happy.

Sent from my iPhone :-)

just a little added excitement

Tomorrow Shawn and I leave for a three part trip.  First, Atlanta - me to stay with my friend, Shawn to attend a conference,  followed by a trip to NY to see a doctor, then to the Jersey short to spend time with my family.

So I figured I'd make the trip a little more exciting by first breaking my foot.  I have a non-weight bearing cast and crutches.  The non-weight bearing part means I get to build up my arm muscles, while simultaneously losing muscle in my left leg.

Never a boring moment.

Insurance

Shawn got a letter yesterday from our insurance company.  As we had appealed their decision to not insure him, I expected the letter was in response to that, saying they would stick with their earlier ruling.  But lo and behold - it again said just the opposite!  Remember, last time I opened a letter from them, I was assuming it was restating what I had been told on the phone, that they would insure him, but instead it said they were denying coverage.  So this time, the letter said they had reversed their earlier decision and WOULD BE INSURING HIM!  

The authorization is effective on March 3, 2010, the date he went on COBRA.  So now, I  have to find out how to get back the last two months of COBRA payments, plus the May payment that was sent in just a few days ago.

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.

Trust nothing until you have it in writing...insurance part 2

After calling the insurance company every few days, finally I got an "answer" from someone.  She said "I see the form in your file and it has not been rejected."  I asked what that meant, and she said that it meant Shawn was covered.  "Not rejected" didn't sound quite good enough to me, so I asked if I would be getting a letter to that effect.  She said to expect a letter in the next 5-7 days.  Sure enough, 5 days later a letter appeared.  Unfortunately, it did not say what I was told; in fact it said exactly the opposite - that the Shawn does not qualify for continuation of coverage.   It is their determination that he is capable of self support and therefore not eligible for coverage unless he is a full time student.

This can be appealed, and we're working on that.  Meanwhile, it turns out that prior to this decision, he was being covered by them in January and February, so he is now eligible for COBRA from my new insurance company.  And because the event is a loss of dependent eligibility, he is entitled to 36 months of COBRA, rather than the 18 months from IBM.  (The event for IBM was not loss of status, it was loss of coverage, which has different time limits).

So for now, we're switching COBRA from one policy to another, and if nothing else we'll at least have that for the next three years, until he turns 24.  Hopefully between now and then something will change for the better - his health or our country's insurance situation - is it too much to hope for BOTH of these?

National Donor Day - February 14

I have a friend who recently had a liver transplant.  Through him and his family I've seen just how horrific it is to be waiting for an organ.  I hope no one reading this ever has to go through such an experience.  But whether or not it is  someone we know, it's certain that this same horrible wait is being experienced by countless other families.

So I'd like to use this space to tell everyone about National Donor Day:
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As National Donor Day approaches, visit OrganDonor.gov to learn about donating organs, tissue, marrow, blood, and other life-saving matter.
If you would like to become a donor, fill out an organ and tissue donation card, register with your State Donor Registry, and convey your wishes to your family. To donate blood, visit the Red Cross and find a donation site near you.

insurance worries once again

Once again, I'm not sure exactly what will happen with insurance for Shawn.  The one big hesitation about taking this new job was whether I'd be able to insure Shawn who is over 19 and not a full time student.

In Illinois, this is not a problem - but the Illinois law (which lets a parent insure any dependent up to the age of 26) doesn't apply to policies that are not written in Illinois.  And my company is based in California, not Illinois.

In December, I was told that we'd most likely get insurance by considering him a disabled dependent.   We promptly filled out their form and were told that were this submitted by a member it would be accepted, but will have to be resubmitted once you sign up.  That, plus the knowledge that at the very least we have COBRA for 18 months, plus the outside hope that SOMETHING would change with regard to health care in the US in those 18 months, made me decide to go for it.

>But now here we are, last year's insurance carrier has been replaced by a new group of carriers, I've signed up for one and submitted new paperwork, and I'm waiting to hear their decision as to whether they will cover him.  I call every few days - first to make sure the paperwork was received (which they couldn't verify until two days after it was faxed, as it has to first "get into the system").  Then to verify that it's been filled out correctly and there is nothing else they need from either me or Shawn's doctor.  Then to find out the status which for the last few weeks has been "they are processing it."  On Thursday I was told that they should have an answer in the next week or so and that if they deny the dependent they will refund the premiums.  But of course it's not the premiums I'm worried about, it's the INSURANCE.


I hear lots of pros and cons about the health care bill: "it's not perfect", "it doesn't contain X", "it contains Y which I disagree with".... but I suspect none of those that are against it are sitting around worrying if they or their family will be insured.  And now it seems to be more about whether the Republicans or Democrats will "win" and seems to have nothing to do with the people who are denied insurance because they are in the position of needing it.

From where I sit right now, I care less about finding the perfect solution and more about finding ANY solution that will allow me to have the peace of mind to concentrate on finding a diagnosis for my son rather than worry about how to keep him insured.

Not Myasthenia?

Based on the EMG, Dr. P, who is a neuromuscular specialist, doesn't believe that the muscular weakness is originating from either Myasthenia or any other neuromuscular disease.  Which is both good and bad.  The bad, of course, is it leaves us once again with trying to figure out what IS causing the weakness, breathing problems, unstable blood pressure... 

Dr. P's recommendation was to bring in another doctor - Dr. N, an internist who has a reputation for managing difficult cases.  So he's next on our journey, we see him this Thursday.