Take your pills

An every day conversation with my husband:

Me: "Did you take your pills?"
Him: "Let me check. No"

And my lessons from last weekend stand by me.

I am not alone. Drug companies are creating programs to help patients take their pills. Yes its part of a money making program. The more people who take their pills the more they can sell - as the cynical side of me says. But the real problem is people who do not take their pills get sicker and sicker. This drives up the cost of medical care in the US. (Which uses up more health care money so big sticker medications are in the spotlight for a smaller share of the remaining money.)

Time to stop being cynical.

Think of it this way, a patient goes to the doctor for an ailment. The doctor prescribes a medication for which the patient never fills the prescription, or if they do fill it, they forget to take it. If they had taken their medication regularly, they would feel better and not need the surgery they eventually had. Medical research is done so that we get better and live longer.

One of the problems is affordability of the medications. Pharma companies have long since had payment options for the uninsured which does help some.

Another problem is that some people get the mind set that no pill will help them. Or other reasons they come up with not to take the pills. Or side effects, fear of side effects, or no perceived effect by the medication. Along with basic forgetfulness - something we all suffer from time to time. A friend hurt her back recently and said she had a bad night the other night and was in a lot of pain - she forgot to take her prescription....

My message is "take your prescriptions as prescribed and if they don't work, cause side effects, or you can't afford them, call your doctor for options."

A really big mistake

So I was stupid (and testing my boundaries) and skipped my pills for two nights. I will never do that again. Ever.

Yesterday I went to the gym and had a lot of pain. My left hip gave me enough pain that I thought I would have to go home. But I took a break and was okay. But I did cut my workout short because of pain issues. Then when I came home, I took it easy (mostly - but did move some furniture around) and made a point to rest some.

But then I started thinking (being dangerous again) about all the assorted pains I have been having, which are not necessarily what I expected. I had expected some fibro pain, back pain, and RA pain. However it doesn't make sense to me that my left hip has given me so many issues.

I have had bursitis in my hip but that has been under control for along time. So why am I now having so much other pain there? This is a new kind of pain, not bursitis pain. Is there something else wrong? No there can't be. I just don't have time for other ailments.

I will discuss it with my doctors at my upcoming visits but am not going to rush in for a new appointment with any of them.

Today I have nothing planned. I don't need to go anywhere. I can stay home and take care of me and continue the unpacking/reorganizing process. We now have a deadline - house guests arriving in ten days - so I have to get moving. As much as I can without causing more pain.

And I will never intentionally skip pills again.

Testing my limits

How often do I look at my box of pills and think 'what if I just threw them all away'? The answer is 'too often these days'.

Okay, I am human and even though I fill my pill box ever week, I am not perfect. Sometimes I forget to take some of my pills. I have to take pills twice in the morning and sometimes I miss the second set of morning pills. Those pills are ones which I take twice a day so if I miss half a day's dose every couple of weeks I figure I am okay.

But what if I skipped the ones I take once a day? I really make an effort not to. I have been known to wake up in the middle of the night (say hello to insomnia!) and check to make sure I have taken them all. I figure once, I could survive. But what if I just stopped them all?

The one pill I know I really need to take every day is my levothyroxine - which is my substitute thyroid gland. I know what happens if I forget that one. One day is fine, two or more days starts to cause problems. I once went on vacation and left my thyroid pills in my hotel in NY before flying to the Bahamas. I started to blow up like a balloon. These are important enough that I know if I ever forget them for some reason, most pharmacists will 'advance' you a few pills, especially if they are part of the same chain where you get your prescription.

I am tempted sometimes to stop taking one or two of them to see how much of an effect they really have on me. I have a weekly pain patch that has shifted from Thursdays to Monday nights after I have gone without it for a bit. Sunday night I was sick of the itching it was causing me so I yanked it off in the middle of the night and didn't put another one on until yesterday afternoon.

For some reason, I have felt like pushing my limits recently. Maybe its a phase. Maybe in some ways I am feeling better? I don't know. I just know I hate being dependent on a bunch of pills to survive.

I'm not sure this is an upgrade

I broke my old pill box. The Sunday latch no longer works.

I had to buy a new pill box. I had to get one that has AM and PM too.

Very depressing. I feel old. I was at the gym the other day and another woman said to me that she takes too many. She takes 3 in the morning and 7 at night. I take way more than that. She is in her early 80's and is recovering from heart surgery.

I dont travel well any more

I used to travel at the drop of a hat. Skiing for the weekend? No problem. Run off for a weekend hiking in the mountains? Bring it on. Drop everything and head for the beach? Sure. A day in the city followed by dinner out? Let's go!!

Now, can we go off for a day of fun? Only if I get enough sleep first. A weekend away? Let me count out my pills to make sure I am prepared. Is there plenty to do if I need to lie down for a bit (so my husband isn't too bored). Are there wimpy activities if I need to change plans?

I am traveling, by myself, with my newest purchase, a four wheeled suitcase which is much easier on my back. I will be home tonight... I may implode first because I forgot my pills last night. Damn. Triple damn. That's only my anti inflammatories, folic acid, antacid, second lyrica pill, antidepressant, vitamins, and I can't remember what else that my body needs to function.

You say, why can't you take them this morning? Some are twice daily. Some make me fall asleep so I purposely take them at night. And I can't take anything else until its been an hour since I took my thyroid meds. So I am better to suck it up through my morning meetings and take an Ativan later for my flight home.

I can't believe I forgot them as I skipped a group outing to get some sleep. I went down to the hotel bar and had a glass of wine while they made my sandwich which I ate in my room so I could rest.

Finally I am contemplating some sort of revenge for the drunk neighbors who, came in at 1130 and were banging around next door for an hour or so. I need something loud to drop. Hmmm.... my inner evil twin comes out when I don't get enough sleep.

But I should be on my way home this afternoon to my husband, cat, and own bed, with my day by day pillbox on the bedside table. I can't wait.

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.

Do you remember?

The Alamo? The Maine? No, do you remember to take your pills regularly. It turns out I am not the only person who doesn't remember to take their pills. I have five prescriptions to take daily. I also try to take vitamins daily. I have two pill boxes with Sun-Sat compartments to keep track of them. I sit down every Saturday afternoon and refill them in a complicated system that includes spreading all the bottles out on the bed and opening them one at a time, putting them in their little compartments, and putting the bottles away. But the first step of my Saturday afternoon routine is to look at what I missed the previous week and give myself a little pep talk.

I always remember to take my first two pills of the day - which I have to take an hour before my next ones.
I always remember to take my next 3.5 pills (why is it the smallest pill I take (1/8" diameter) has a daily dose of 1.5 pills?) once I have eaten something.
I almost always remember (6 out of 7 days at worst) to take my evening pain pill.
I usually remember (5 out of 7 days) to take my vitamins. The problem with vitamins is not only do I have to remember to take them later in the day, I have to remember to take them at three different times - noon, dinner, and before bed.

Its way too complicated.

Then once I get through pills, I have to remember to do my damn exercises. I have twice daily arm exercises, twice daily ankle exercises, and one daily back exercises, and a daily walk. Have I whined about this recently? I can't remember.

Anyway, this morning I was gratified to learn that I am not the only person to forget their pills. But I was surprised to learn about how many people don't take their pills because they don't think they need them daily.

Basically, my thoughts are that if a doctor says here's a prescription for a medication for something, you do have a choice if you want to take it but you should understand the risks if you don't. I know women who have opted not to take Tamoxifen by choice. Or others who manage their thyroid issues through natural methods as opposed to medication. But its their choice and they made it. But if you do choose to take a prescription you need to take it as prescribed. If an antibiotic is prescribed for ten days, you need to keep taking it. Also some medications may not make you feel different but may have a long term effect on your body.

The whole issue of affordability is different. If you cant afford a prescription, talk to your insurance company, talk to your doctor, speak up - they won't know if you don't tell them and there might be options available.

Enough for this morning. I am going for a walk. Its 37 degrees out but I need to motivate as I have a 9 am doctor appointment and then have to go to work and then work from home. If I don't go now, I won't go. But I will take more pills before I go.

I'm trying to pack

This weekend, well more like 12 noon to be exact, I am going away for a girl's weekend. I am leaving my husband behind to deal with the ever more finicky cat. There will be eight of us for girls weekend and our policy is: no rules, no men, no pets. So we break the first rule by having two more rules, but you get the point. (And laugh when husbands call with stupid questions.)

A friend of mine has a gorgeous cabin on the side of the mountain (more than a mile past the sign that says 'narrow windy road' where the pavement ends). Its the kind of road where you grit your teeth, keep your hands on the wheel, and pray a giant logging truck isn't going to becoming down the hill as you avoid rocks and potholes and possibly deep ruts. But then you get there and its beautiful and we have a blast. We all bring and make food and have a great time. I am bringing a very healthy salad with chicken to grill on the side, making home made bread, and bringing a bowl of fruit. I am not responsible for any other diet busting foods that are being brought by others or the amounts of alcohol which might be consumed. (I already broke my diet for the past two days, so what's two more?)

So I have been trying to pack. The first problem is I have to get out of the house by myself which means I have to carry things. This could entail many loads to prevent back/ankle/arm strain & pain. I am then driving to a friends house where three of us will drive up together and I assume from that point on, there will be people to help me carry and prevent back/ankle/arm strain & pain.

Then I have to pack my medicines for the weekend. Customarily I use two weekly pill boxes and keep a couple of back up pills (used as needed) in separate prescription bottles. I have had to change my system and repack into one little weekly pill box with two back up bottles. Now I can just not forget them all and I'll be okay.

But I am looking forward to getting away. I need some getting away space. I'm looking forward to doing a lot of nothing except talking and laughing with my friends. The same group of us has been doing this for more than 10 years. So off I go. And there is no internet or cell phone service either.

Damn I have just discovered I can't find my list of what I need to pack.... OOOOOHHHHH NNNNNOOOOO!!!!!