There is no magic pill! Sorry!

I admit I often ask my doctors for a magic wand to make bad things go away. They tell me they cannot provide it no matter how nicely I ask. There is not a magic pill, no matter what the pharmaceutical industry wants to make us think.

In a perfect world, I would like to have a magic pill or magic wand for the following: breast cancer, thyroid cancer, rheumatoid arthritis, degenerating disk disease, and fibromyalgia. None exist. So I am whing.

The use of tamoxifen to help reduce breast cancer occurrence in high risk patients is a smart idea. It is a relatively small portion of the population and something that can't really be affected by diet, exercise or other changeable activities.

But I have a real problem with the new 'brainstorm' to give statins to millions of people who are at a risk of 7% or more of having a heart attack in the next ten years. Let me just say that somewhere around half the panel of doctors who decided this were connected with the pharmaceutical industry - they didn't vote so that is supposed to make it okay. (I would assume they did make their opinions known in pre-vote discussions.)

Doctors are now going to be told to use a new algorithm: "The equation considers age, sex, total and HDL cholesterol, systolic blood pressure, blood pressure treatment, diabetes, and smoking." HDL cholesterol is impacted by smoking, weight and exercise or lack of it. Systolic blood pressure can also be impacted by the same and salt and alcohol intake.

So let's see, get off your butt, start moving, eat right, and all that stuff, or take a pill for the rest of your life and make the pharmaceutical industry rich? Hmmm.... I prefer the former option over the latter.

I am sure statins have side effects because everything will have some kind of side effect.

PS And this recommendation will impact 1/3 of Americans. The claim is they are cheap but my guess is that the insurance industry will be on the hook for a large portion of these costs.

The misled consumers - courtesy of big pharma

I wish to say a big "thank you" to Johnson & Johnson and their marketing departments for misleading so many patients and nursing homes on three of their drugs. For their efforts, they will pay $2.2 billion in fines.

"The settlement involves the schizophrenia drugs Risperdal and Invega, and the heart failure drug Natrecor, the company and Attorney General Eric Holder said. 

Johnson & Johnson and two subsidiaries "lined their pockets at the expense of American taxpayers, patients and the private insurance industry," Holder said."


You think they would have learned from their $1.2 billion in fines in 2011. Oh but they got all that money from the mislead sales they did make so that they can afford these fine.

What a business model, sell things for other than what they were approved and then use the extra money you early to pay fines and legal fees. I should go work there - maybe they would pay me for not showing up!

Ethical dilemma on a cancer drug

I have been mulling this over for a few days. A woman in Texas, Andrea, with stage IV ovarian cancer wants BioMarin to allow her to receive a new drug BMN 673 which has not yet been approved for treatment. Her doctor thinks it  might help her. She hopes it will help her. She understands that it may not help her but it has helped others. There is a big debate going on.

I completely sympathize with her that she wants to try everything possible to stay alive. She and her doctor have been lobbying BioMarin to get the drug. The company is not agreeing , saying it is still in clinical trials and has not yet been proven. They could add her in the clinical trial - but she probably does not meet their criteria. It could help her but it also could mess up their data.

This is a real ethical dilemma and I hope for the best.

What I dislike about this and makes it smack of I'm not sure what. She hired a PR firm who is working for free to publicize her case. Its in the news - national and local here in Boston. She has a change.org petition going. Its all over Facebook.

I just want to say what are you thinking? That you can generate some media hype to change their mind? I was all for this woman but when I found out she has a PR firm creating the hype for her I'm not so sure.

Medication management

There is all kinds of advice out there on how to safeguard and manage prescriptions. One article I read recently even advised keeping them in a safe. I thought that was a bit of overkill but I am careful.

I have several issues with my medications. One of them is toxicity to others. My cat can't recognize a chipmunk under his nose these days but there is a family joke about the vioxx incident* that he survivied. I wouldn't put it past him to try to ingest something he finds on the floor. I am currently on methotrexate which is actually a chemotherapy drug which comes in little sealed bottles and has all sorts of warnings.

I make jokes about knowing when you are on the good drugs as they have street value. A drug addict would be very happy with the contents of my little stash. When we are going away, I hide it away a bit more than usual. I realize that if someone broke in my medicaitons would be a target - that is why they are not sitting out. Added to the fact that they would completely cover my bedside table, I needed a larger storage area for them.

I am also aware of the addictive potential of several of my medications. I am careful to think about when I take my medications, how often, and how much. I know two tramadols make me very stupid so I avoid that. I make sure I take my daily pills and use one those pill boxes with a daily box to make sure I don't forget or even take them twice (which would be a huge mistake).

Finally, every week when I fill our pill boxes I make sure everything gets filled and we don't run out. The mail order prescriptions are a pain when you run out because I need the emergency short term fill at the local pharmacy while waiting for the replacement to arrive by mail. Never mind the times I have to wait for the damn insurance companies to authorize refilling them.

I think I am just trying to be an adult here - a useful thing to do from time to time.

Today I am a normal person

First I overslept (but still have time to blog - a tiny bit). I forgot to take all my pills last night so I have to figure out which ones I should take this morning vs which ones I should skip but I have to wait 1-3 hours before I can take any of them after my synthroid. That was after I put my pill box back together after dumping three days worth on the floor and having to sort them all out again. I think I am still missing two pills but as long as the cat doesn't eat them I can cope.

I wanted to leave for work early  but that doesn't look like its happening. I have showered. I have not eaten breakfast - I will do that when I arrive at work. I did make lunch for both of us. I have not yet brushed my teeth or my hair but my gym bag is packed.

Last night I was running around the back yard in my PJs at 10 pm with a flashlight looking for the damn cat who got out the basement door. This  morning I get an email from my next door neighbor that she has a raccoon on her back porch. I would generally not worry about the raccoon but since my cat is 18 years old, blind, deaf, and can't smell, he wouldn't know a raccoon until he walked right up to it.

Damn. I am now really late. Off I go as a normal person.... or as normal as I can ever be.

The FDA - a little background

We all love to hate the FDA. I mean they are the people that take food off the market, have all these rules and things that make food cost more, delay the acceptance of new medications, and cause pharmaceutical companies to have all these years of research driving up their 'costs' (which get paid by patients in the end, one way the other).

So why do we have an FDA? How did that happen? I never really knew or thought much about it. I just thought it was another one of those big Washington based alphabet agencies making rules and spending the public's money.

I try to assume that people are going to do the right thing and not rob, steal, or corrupt. People generally do mean to do their best and help others. But this is not always true,  hence the reason for all the government and policing.

Meat packing plants were a wealth of horrors. Its surprising more did not die from food from them.
It is a well known fact that the nineteenth, and probably earlier, centuries were full of patent medicines where you might kill yourself thinking you were healing yourself. Who knew what was in them. These were exposed in an article called "The Great American Quackery" which ran in Colliers Magazine in 1905. This resulted in the Pure Food and Drug Act of 1906.

Finally in 1938, after over 100 people died from taking a patent medicine full of a toxin, the Pure Food and Drug Act was passed which required manufacturers to prove their products were safe. This lead to the creation of the Food and Drug Administration.

So that is your little history lesson for the day. I am heading out for a dentist appointment on this rainy morning....

I'm learning

You may call me slow sometimes but I am learning. Some medications when you start taking them  have a relatively quick impact on you. You take a tylenol and your fever usually goes down and pain subsides within an hour. Antibiotics often make you feel better with in 24-48  hours.

Rheumatoid medications are different. They can take months, as in 3-6 months.

When I was diagnosed with RA last fall, I was immediately put on prednisone and plaquenile and we quickly learned I was allergic to both. I was then switched to oral Methotrexate (MTX). The dose was upped to the maximum in January. I started to feel a little  better, I thought. But not better enough so I was switched to injection MTX in April.

I have felt some improvement but could not be completely sure. My back pain was making it difficult to 'feel better' because I was always in pain from something.

After I had my back treatment at the end of June, I thought my back was better but immediately got a double ear infection and was too sick to care about body aches and pains as I lay on the couch and watched Lifetime movies and bad reality TV.

Since I was put on antibiotics for two weeks, I had to go off my MTX. Its been three weeks since my last treatment.

Over the past week I have been feeling more and more tired with more and more aches and pains. Yesterday I was ready for a nap at 9am and my wrists were killing me.

Last night I started doing a little research to find out from Dr Google how soon after finishing antibiotics is it safe to restart MTX. After reading a lot of answers online I realized two things:

1. I was feeling awful because my RA has been acting up because I haven't been taking my MTX.
2. Methotrexate was working to help my RA.

Tonight I will go back on MTX and hope I start feeling better soon. I hope it doesn't take months to feel the effects again.

My rheumatologist told me if you have been on MTX for ye ars and go off it fo a few weeks for antibiotics, its not that big a deal because your blood levels are high enough. But since I have only been on it since April,  I would probably feel the lack of it. She was right.

I am learning, slowly. I will suck it up, wear my wrist splint, and take my pain meds.

Its been a long couple of days

Wednesday I had my back procedure. Thursday my back hurt less. Friday I started to feel like crap but got a manicure/pedicure in the afternoon to make me feel normal.

Saturday I started feeling pretty bad and took my temperature which topped out at 101.6 at 2am this morning. I couldn't talk and my husband had to screen my phone calls and tell people to email me instead. I feel like all I have done in the past four days is lie around and take drugs - pain meds, cold meds, and tylenol. I have also eaten chocolate chunk chocolate ice cream for its healing properties.

I woke up this morning and my temperature was 98.8 so I think I have mostly recovered. I am finally beginning to think I might survive. I am not going to work tomorrow so I can continue to recover.

But my back doesn't really hurt much any more.

Personally I think that if you have had cancer you should be exempt from the common cold.

A needle free future

I am elated, no, overjoyed, on cloud nine, jumping up and down with joy (as much as I can jump up and down these days) at this news. Companies are now trying to figure out ways to deliver drugs WITHOUT needles.

I hate needles. I see no need for news programs and commercials to show people getting shots. If I have to have a needle near my body, I tell the doctors and nurses that I hate needles and can't look at them. When I had injections under my kneecap (I get chills up and down my spine just writing that), they were very good at distracting me.

I have a coworker who is so petrified of needles he gets freaked out by doctor appointments. I am not that bad but still me and needles do not get a long. Every time I need blood work (every two months now) I tell them I hate needles,  have tiny veins, and they have to use my right arm which has the tiniest veins so they use little kid needles on me. Which still pinch!

When I started chemotherapy I told my oncologist that there would never be a day where I would inject myself with anything. Then with rheumatoid, my doctor muttered something about injectable options and I let her know my opinion of needles. I am still on oral medications but my RA is not under control so that may need to change. (My husband has since agreed he would give me the injections if it came down to it.)

When our cat had diabetes, I refused to learn how to give the injections. Then one day my husband was sick and slept through the injection time so I had to give the cat the injections. He never even  felt them but it was traumatic for me.

Now these brilliant, brilliant people are coming up with ways to deliver drugs orally instead of through injection. It involves capsules, micropatches and all sorts of technical things that sound expensive but they do not include needles so I am happy. Its just two or three years away from clinical trials.... So I will try to be the patient patient for now.

An even playing field please.

I admit to being a little confused here. Why aren't manufacturers of generic drugs held to the same standards of the patent manufacturers and vice versa? This is a tad confusing.

There are lawsuits out there about side effects from generic drugs which are being heard in the Supreme Court.

Basically a generic is the same as the original medication. Federal law requires generic drug makers to provide identical ingredients, warnings, and labels as brand-name products.

If generics make up 80% of the drugs sold in the US, they should have the same accountability standards as the original manufacturer. And any side effects are therefore more likely to occur to the generic manufacturers.

"Drug companies have long asserted various doctrines of pre-emption, saying they are protected from most product-liability claims if they have met federal safety approval standards."

[This is a load of crap in my opinion. No one is above the law.]

"They argue that federal regulatory judgments trump state consumer safety laws, which are often tougher than Washington's standards.

But the high court had given a big victory to patients and consumer rights groups in 2009 when it ruled in favor of plaintiff who sued Wyeth -- now owned by Pfizer -- after losing an arm to gangrene from a common, brand-name anti-nausea prescription medication. She had won a $7 million judgment from a Vermont jury for her claims."

[About time.]

"Then last year, the Supreme Court ruled 5-4 that generic drug companies do not share the same level of responsibility as makers of brand-name equivalents, to update their warning labels when significant new risks emerge."

[Seriously?]

Its time to even the playing field here.

Fibro what?

So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.

Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.

Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!

So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:

1. "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
2. The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
3. More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
4. Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
• Fatigue, night sweats and sleep disturbances.
• Memory difficulties and cognitive difficulties.
• Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
• Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
• Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
• Hearing, vision, and vestibular (balance) abnormalities.
• Heartburn, palpitations and irritable bowel syndrome.
• Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
• Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "

Of these I can say yes to 1, 2, 3, and 8 of the 9 bullets in number 4. I don't think I have the cardio issues.

But otherwise I am a very healthy person.

Medical research can do nothing

 

But marketing can make you believe it did. I am overjoyed I tell you, overjoyed to read the news:
"Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing. 

"“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”"

And its not that the drugs don't necessarily work but that the side effects can cause more problems than pain they resolved. Great. Years of medical research down the toilet. (This is an example of while they had great intentions in their research they forgot the key phrase 'do no harm'. It doesn't help if a medical advance comes at a great expense to the patient. They achieved their goal but forgot about us patients. This is one example of many out there.)

Since I have been diagnosed with fibromyalgia so many people have said to me 'don't they have medications now that you could try?' The answer is yes they do. And I have tried Savella and Lyrica and I think Cymbalta already. I didn't have as many side effects but they all stopped working for me. And they interact with other medications I take so they have to be changed as well.

They should do more medical research and pay attention to the overall well being of the patient, not just resolving the pain.

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.

Medications and me

Medications have a tendency not to agree with me. As a child back in the dark ages of the 1960s and 1970s, if I had strep or an ear infection, the local pediatrician would prescribe Penicillin, the miracle drug. At one point, I remember her saying that I had a sensitivity to  it which I promptly ignored because I was a teenager. I don't think my mother remembers that either..

When I was sixteen, I went on a summer program to Madrid, Spain to study at the University of Madrid. We stayed in a university dorm (with a bar on the ground floor, a convent on the first floor, and a dining hall on the second floor which made the world's best paella once a week at minimum). One day I wasn't feeling well, napped all afternoon, attempted to eat dinner but wasn't hungry and went to bed early. I woke up in the middle of the night with a need to use the bathroom and ended up passing out in the hall outside the chaperone's room. The doctor was called, accused me of using drugs (my little bottle of sudafed was deemed suspect) and found I had a temperature of 105. Their modern medine (this was just post-Franco Spain) was shots of penicillin in my behind twice a day. Some how I survived that with no reactions.

(They were very helpful in taking care of me by leaving a nun in my room 24/7 so I was never alone. The nuns only spoke Spanish - I think they wanted to make sure I didn't take any more contraband sudafed. With a temperature of 105 I couldn't speak a word of Spanish if I tried. I was also given everything at room temperature - so as not to shock my body. And each aspirin table needed to be cut into 6 little pieces and swallowed individually with a sip of warm, flat soda so I would not choke. I did get better after a few days and we never figured out what it was. But I digress.)

I never seemed to get strep or ear infections or anything requiring antibiotics for years (maybe I was really a  healthy person once.) Then in the 1990s I had dental infection and was prescribed penicillin which gave me a full body rash and hives. On a business trip... in Europe. I stopped taking the penicillin immediately and called my dentist when I was back in the US. So no more '-cillin' drugs for me.

Around 2001 I managed to ruin a perfect day of skiing with a tiny fall which resulted in a toboggan ride from some very nice ski patrol followed by crutches and knee surgery. A family friend, and former OR nurse, told me to take two of Vicodin that I had been prescribed the night after the surgery to ensure a good night's sleep. I was up all  night. So no more Vicodin or Tylenol 3 for me - we think its the codeine that causes the problem.

Then with chemo, I was given Benadryl to prevent an allergic reaction to the infusion. I was allergic to the Benadryl which means I really can't take any antihistamines ever.

Last Friday, my rheumatologist prescribed me Plaquenil and Prednisone for my RA. I was up all night from the Prednisone and stopped taking it. When I tried it again on Monday morning, I ended up with a bright red face and rash. We decided I should stop the prednisone for now and stick with the Plaquenil. As the week progressed, my rash progressed. It now covers my face, neck, upper chest, around the side of my torso and my arm pit (which is really the pits.) The suspicion is I might be allergic to both.

Our next step is when my rash goes away - in a week or two (according to the doctor) - she will put me on something else for my RA. I hope I am not allergic to that as well.

New Medications Are Not Agreeing With Me

Friday I went to my new doctor, a rhuematologist to start treatment for my newly diagnosed Rheumatoid arthritis (early stage, non erosive). She put me on prednisone (2 tablets daily for 1 week, then 1 tablet daily for six weeks) to start working sooner and Plaquenil (2 tablets daily forever) for long term treatment to stabilize the RA.

I picked up my prescriptions in early afternoon and took both. I knew there was a risk that the prednisone would keep me up at night. It did. I barely slept which means I was a touch cranky and nearly fell asleep at the gym (but get points for getting my lazy butt there). I said no more prednisone until Sunday when I can take one tablet first thing in the morning and hopefully it will have worn off in time for me to go to bed. We slept late so I decided to put that off until Monday morning when upon arising at our normal weekday time I immediately took one prednisone. I did take Plaquenil on Saturday and Sunday.

By the time I took a shower, I decided that I must have gotten a sunburn when we ate lunch outside on Sunday as my face was feeling burnt. Upon closer examination my face was all red and bumpy so I figured some kind of reaction. I got to work and the three women who were there (who are mothers and therefore good a noticing and diagnosing little ailments instantly) said 'why is your face so red?'. Their diagnosis was I had a rash all over my face.

I called my rheumatologist's office immediately and ended up speaking with her nurse practitioner as the doctor doesn't work on Mondays. She thought I was having a reaction to the Plaquenil but I could tell she wanted me to head to an ER if it got worse. I am allergic to Benadryl so I couldn't just take one to help with the symptoms. I did tell her I had an appointment with my back pain doctor that after noon to talk about treatment for my newly diagnosed fibromyalgia and would mention it while I was there.

My pain doctor thought it was a reaction to the prednisone and not the Plaquenil but advised not taking either until I talked to my rheumatologist today. He also did not prescribe anything new for my fibromyalgia other than to increase my pain meds dose. I think he wants to get the RA under control so they can focus on one ailment before going on to the next ailment.

I felt pretty yucky yesterday afternoon and drank tons of water on the theory that I could wash it out of my system. I sat around for a while and then went to the gym which turned out to be a good thing as one of the trainers were there and gave me lots of advice for adapting my exercise program until the RA meds kick in.

Last night I went to bed early, and woke up every couple of hours. My face still feels weird but not as red and blotchy as yesterday. The true test will be when I get to work this morning on what today's verdict is from the mother's I work with.

I don't like these new meds. They are turning my world upside down. Who knew two little brown prescription bottles could change my life so much? I need to find something to work for the RA and then go on to the fibro. This will take months. Grr, grr, grr.

End of life medication

In Electionovember (this is not a political post), Massachusetts residents will have the opportunity to vote on End of Life Medication. There are several requirements to the law:

• Must be an MA resident
• Must have been given less than six months to life
• Must be capable of making and communicating medical decisions
• Must voluntarily make a wish to die and make an informed decision.

I will vote for this. First of all, I think it should be an option. If you are dying and in pain and there is no hope, why can't you say 'that's it' instead of lingering in pain for a few more weeks? If you disagree, you do not need to make the choice to do it.

The problem with these laws when they try to pass them, is people start saying 'well I would never do that' and people come out of the woodwork saying my neighbor's hair dresser's cousin's friend was given 3 months to live and 20 years later they are still here. Everyone has the right to their own beliefs and this is a law that would allow people to make a difficult decision if they wished.

What if you had something like Parkinson's or Alzheimer's which is irreversible and incurable and you knew you were destined to die over a period of months or years and you could make the decision while you were capable that you wanted to be prescribed end of life medication when you got down to the bitter end? If you know your lot in life is to die a slow and painful death, wouldn't you want a way to avoid the pain if you could? We do not know what is in our future and we could all end up in that circumstance. I think we should be allowed to have that choice if we choose to.

Call me irresponsible

Yes I am irresponsible. First of all I  did not blog for several days and didn't tell anyone. Well, posting on my blog and saying 'I am going away and won't be blogging' is inviting the burglars in. I apologize and now I am back. My cat is overjoyed we came back even though he had a very nice cat sitter who came and fed him, brushed him, and sat with him twice a day. But he feels he was neglected and malnutreated for the duration.

I am also irresponsible because I failed to pack my medications correctly. I packed my husband's pills. I packed my vitamins. I packed one pill box with prescriptions. I did not pack my daily prescriptions in my other pill box. Saturday night I remembered to take Saturday mornings pills. Then I found I was missing my Sunday and Monday AM pills. Well I took my Monday AM pills when we got home this afternoon. And I still seem to be alive, so no harm, no foul.

I am also irresponsible in that we went on a small hike on Sunday and at the very farthest point from the car, I stepped funny and 'felt' my ankle do the similar bad thing it did about three years ago that resulted in a boot and lots of PT. Right now I am in the ice, elevation and avoidance category. I'll give it a few days before I decide if it needs additional attention.

Finally I am very irresponsible in that we came home and started to  unpack and I couldn't find my wallet. I wasn't in my bag. I wasn't mixed up in the dirty laundry. It wasn't anywhere in the car, under the seats, etc. Finally after a good deal of stress, I found it sitting on the  bed next to my purse.

But I recovered from all this now by taking my pills, fed the cat, resting my ankle, destressing, and no longer being covered in wood smoke/insect repellant perfume.

You can call me irresponsible but I may not answer.

A 6.5 day pain patch

I have a bad back (in case I haven't mentioned it before) that gives me lots of pain. I have tried different medications for it, have special workouts that are supposed to help, take anti-inflammatories, have had several medical (mis)adventures to help relief pain, and am a firm believer in the value of multiple ice packs (especially in the summer). I also have breakthrough pain meds for when either I do stomething stupid or try to pretend I am a normal human being. Either my back pain is increasing or pain meds stop working and they get switched around and swapped out for others.

My latest pain relief are these wonderful (supposedly) 7 day pain patches. I put a new one on every Friday morning. The first few weeks they were great but now I am discovering a pattern. They only last 6.5 days. They come in little boxes of four for each month. If I switch to every 6.5 days I will run short each month and of course my insurance company would never let me detour from the designated dosing. (This was made very clear in the fancy DVD that accompanied my initial package.)

Last night my back hurt a lot and my husband accused me of being cranky. I told him my back was not cooperating and my pain patch wasn't working. He was deeply concerned that it would be several days (of crankiness) before I could put on another patch. I assured him I would put on another one after my shower this morning. He has already asked if I have put on the new one. Do I look like I have showered yet? No, my hair is still messy and I am still watching the mismatching pajamas I put on last night. And I might still be cranky.

I am optimistic about these patches. I may still be adjusting to them. I am also on the lowest dose available and go back to my doctor in another month or so to see how I am doing. In the meantime, I will just call them my 6.5 day pain patch.

I did not get the math class

I did not get the thyroid cancer math class. I am sorry. I can't remember it all. I get confused. I fake it and pretend I understand. But I don't.

I am blaming a combination of chemo brain and the fact that when I had thyroid cancer the world was different my doctors just gave me a Synthroid (synthetic thyroid hormone) dose and never explained numbers. Every so often they would look at my blood test results and say 'hmmm, let's adjust your dose'. Part of that was because that back then Synthroid was not available in a million different dose levels. I think it was just 100 mcg or 200 mcg. Now its available in doses of everything from 37.5, 50, 75, 87, 100, 125, 150, 175, 200 mcg and many more.

At my last appointment with my endocrinologist, my TSH level was a little too low. It was .22 and should be at the low end of the normal range of .35 to 4.5. So instead of taking 1/2 a pill once a week my dose was reduced by another 1/2 pill a week and as a result my TSH level went up to .53 which is in the acceptable range. When they decrease your dose, your levels go up - just to make it confusing.

My doctor pulled out a calculator to figure out what the dose should be. Should I go down to 125 mcg with a half pill once a week or go with 137 mcg and take a half pill twice a week? This way I am getting an average of 117.4 mcg each day. If I went to 125 mcg and took 1/2 a pill once a week I would be at 116.1 mcg which she thought was too low. She asked me if I used a daily pill box before deciding what the dose should be.

Then there are T3 and T4 levels that need to be monitored and kept to barely detectable levels so I don't remember those numbers either. These are monitored because if they are detectable it could be a sign of recurrence (I think).

If you go to the thyroid cancer message boards there are all these people asking about changing TSH, T3, and T4 levels and another test that I cant remember. They ask about why they go up and down, should they change their drug levels or change their doctors or change something else. What happens when you gain or lose weight or get pregnant or go vegetarian or all sorts of things. And its all about the numbers. I never comment on those discussions. I read them and think 'some day this will all make sense'.

But it appears it will never make any more sense than professional football rules to me. I have both explained to me a million times and I still don't get it. Back when I was in my 20's. I would get together with a friend for drinks often on Monday nights. We would sit at the bar and the bartender and some nice men would always explain foot ball too us. We lied and pretended we understood but never really did.

I think I am okay with this. I get my blood tests. My doctors explain them to me. Its one less thing to worry about.

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.