Just because they tell to you doesn't mean you have to

Taking synthetic thyroid hormone pills are a pain in the neck (literally). Its only a little pill but it comes with all kinds of rules.

• You have to take it one hour before eating or four hours after eating.
• You have to wait at least four hours before taking vitamins, minerals - especially calcium
• You need to take it by itself basically.
• The pills are sensitive to heat so you shouldn't have them shipped to you in summer.

You also can't switch from brand to brand or even to generic. Some people do not respond well to different brands. There are all kinds of issues here. You can read about them here if you really want.

Thirty years ago when I started taking synthetic thyroid, they didn't tell us all these things because they didn't know. Now they keep adding more and more restrictions.

My bottle comes labeled with all of this:

• Take this medicine on an empty stomach. Preferably 1/2 to 1 hour before breakfast.
• Take this medicine with a full glass of water
• Take this medication at least four hours before taking antacids, iron, or vitamin/mineral supplements.
• Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. (This last one is written twice in tiny, tiny print. They could have written it once in bigger type.)

I have never understood the full glass of water business for any pills. What are we going to choke? I guess someone probably has so the lawyers got hold of it and said to drink a whole glass of water so I should temper my sarcasm. But it is a little, teeny, tiny pill.

I take my pill (or half pill - my dosage is a full pill every day except Mondays and Fridays where I take half a pill) first thing in the morning and wait an hour before I eat anything. I do have my coffee with it but that's it. (You get big points in the world of synthetic thyroid hormones just for consistency and taking your pill the same way every day.) I take the rest of my giant pile of pills at the end of the day except the one in the middle of the day that I always forget.

But...

I have a friend who doesn't have a thyroid either and she takes all her pills - synthetic thyroid, vitamins and prescriptions -  together during the day when ever she remembers. And she is just fine.

So just because they tell me to, doesn't mean I have to.

Oral Parity or Time to Write Your Congressman

Does anyone know what that means? When I first  heard it, I needed an explanation. Oral means something to do with your mouth. Parity is something about evenness or equality (I am so smart I came up with that myself).

So what is oral parity? Its about health insurance paying for oral medications the same way they pay for in hospital infusions and other medical treatments.

You get the basics. You go to the doctor and get an IV or a shot and you pay a copay and go home. Or you go pick up your prescription and if you are lucky its a generic and costs somewhere less than $20.

But if its a brand name drug with no generic available or a new brand name drug which is considered to be a premium or Tier 37.8 (or whatever term the insurance company wants to call it to make you understand its EXPENSIVE). That means your co-pay will be something that puts a significant dent in your wallet. My copays max out at 35% of the cost. I have gotten the $100+/month prescriptions and am on one now. If I go through mail order, its a paltry $95 per month.

I think I have blogged about this before but it is increasing in importance. Currently 1/4 of all cancer drugs in development are planned as oral medications. So if a new cancer drug costs $100,000 per year and a patient needs to pay 35% of that? You can do the math.

The results is doctors are less likely to prescribe the expensive oral drugs or patients go bankrupt or just don't fill their prescriptions. To get affordable cancer care, a patient needs to get an IV infusion which is stressful, time consuming, and probably not the most advanced treatment available.

For the third time, a bill is going through Congress:

"The Cancer Drug Coverage Parity Act of 2013 (HR 1801) seeks to amend the Employee Retirement Income Security Act of 1974, the Public Health Service Act, and the Internal Revenue Code of 1986 "to require group and individual health insurance coverage and group health plans to provide for coverage of oral anticancer drugs on terms no less favorable than the coverage provided for anticancer medications administered by a health care provider." Companion legislation must be introduced and passed in the Senate before the bill can become law."

You know how agreeable Congress is these days. Maybe its time to write your Congressman/woman.

Copying Lance

Since Lance can do it, I can too. I will make my full confession.

I take drugs. Yes I do. I take them on a daily basis. I have a large collection of prescription bottles obtained from a variety of sources. I succumb to peer pressure and take them regularly. I have been doing this for years.They might even be consider performance enhancing medications.

There I feel better having confessed.

Now allow me to explain.

I take drugs regularly. I take them on a strict schedule of before breakfast, after breakfast, dinner, time, and as needed for pain and crankiness.

I take drugs that come from several sources - who are all linked by computers and know what I take from each of them.

They also come from several pharmacies who aren't linked but who are all paid by the same evil insurance company which oversees their repayment.

I consider them to be performance enhancing because without them, I would not be able to move around at all, would be in constant pain, and would have no metabolism. With them I am moving faster than if I could without them.

I succumb to peer pressure from doctors, nurses, friends, family members (who are concerned about crankiness) to take my pills regularly.

But there is a difference between Lance and I - mine are all legal and have not been banned through anti doping agencies.

My incompetence has reached new levels

I am a mental midget sometimes and I am very aware of this. I know I am incapable of somethings without assistance. There are many things actually - parallel parking, dealing with crawly things, opening new bottles, reaching tall things, understanding the things under the hood of the car, and the list goes on. The biggest one on the list is taking my pills properly. Yep, I have counting and memory problems.

I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.

I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.

This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.

Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.

Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take  tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.

So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.

All those drugs

When you are diagnosed with cancer, they start handing out prescriptions like they are candy bars. Take this to prevent infection, take this one for pain for the next five days, take this one for stress, and they they keep adding more and more. Precancer, you can live the life of Riley. Post cancer, you have to adopt the weekly pill box that you religiously fill each Saturday and when you travel your tooth brush and passport are no longer the most important things to bring.

Currently I take five medications daily - including the one I am weaning off that has been replaced by a pain patch (which works much better). These include post thyroid cancer replacement meds, post breast cancer hormonal meds, anti inflammatories for my back, pain pills for my back, and an anti depressant to help me cope with the lovely state of my health. Then I have two 'just-in-case' prescriptions plus a different pain patch. In addition I have a little stash of a varying number of bottles and pills that I tried or took for a while and no longer use.

Of these, I know at least three of them have what I call 'street value' meaning I could find  someone to sell them for me on the side if I was inclined to break the law and contribute to the drug problem in this country. Instead at least once a year I take my unneeded medications to the drug collections at community events for proper disposal. I will not flush medication down the toilet because that causes other problems with drugs in the water supply.

I will not give them to anyone else. I know people who routinely share their medications with friends and relatives. This is illegal to start. There was a time as a teenager when I was in a remote portion of Maine and developed an abscessed wisdom tooth and was a four hour bus ride, followed by another three hour drive from home where my mother gave me a couple of her pain pills. But that clearly was an exception to the rule.

I have one friend who talks about getting medications from her sister and her sister in law from prescriptions they get and either don't use often or don't have a problem getting them refilled. I think they see it as 'well she wasn't using it so she gave it to me'. Probably these drugs are not going to fall into the wrong hands and leave this little circle but it is still illegal and I haven't quite figured out why they do it. Another time I was on a retreat with a bunch of women and one of them started asking everyone for an ativan so she could sleep. Um, I did not speak up but someone did give her one, to my dismay.

My policy is my doctors gave me my drugs and they are not for anyone else's use. Sorry. If there were undue circumstances where I had pain pills and there were injured people far from medical care, I might share, but they would have to be dire circumstances.

Health insurance companies are getting more and more on the bandwagon to help prevent the availability of prescription drugs on the street. Blue Cross of MA has just announced a program where prescriptions will be filled for certain pain pills for 15 days and refilled for another 15 days without prompting a review. Unless they are for cancer patients or others with terminal illnesses.

They hope not to bury the medical profession in more paperwork but they also realize there are too many patients who refill unneeded pain medications and they end up on the street.  There is a real problem with pain killer abuse in this country. I have two goals here: not to contribute to that problem and to make sure I don't end up with any unwanted dependencies either. I try to eliminate as many prescriptions in my life as possible. Popping a pill isn't an answer.My doctors have offered others for various ailments and I decline.

I would be happiest if I could be so healthy that I had no prescriptions.