BUT WHAT HAPPENS IF THE FAX IS BROKEN? – Marilyn Armstrong

In case you haven’t noticed, doctor’s offices rely heavily on faxes to get prescriptions to the pharmacy. Although that has always left me a bit twitchy — personally, fax machines and I get along about as well as my printer and I get along, which is to say, not well — I have come to assume they know what they are doing.

I know, for example, that my doctor’s office is very good about getting prescriptions done quickly. If I call in the morning, the pharmacy usually has the script ready to pick up in an hour or two. Considering I pretty much left my last two doctors because they couldn’t seem to get a prescription ready inside of a week, I consider this amazing.

Windy day in a parking lot

Since two important prescriptions were canceled last week due to unavailability and we are planning to be away on vacation next week, I’ve been trying really hard to get all this stuff worked out. There really isn’t anything crazier than realizing your script ran out and you’re miles from your pharmacy.

I got the prescription worked out for the pain medication over the weekend. Not only did I get a prescription, but it works a lot better than the previous one. I actually wake up in the morning feeling like I can move. Not very fast at the moment because my left knee is pretty dodgy, but the rest of me feels almost like … well … normal. I didn’t think it was possible!

As for the Adderall gone missing, it’s all CVS’s fault. Through some accident — I’m serious about this, so laugh all you want — they ordered ALL the Adderall. All of it. So if you don’t shop at CVS — I don’t because I can go to Hannaford and get a prescription immediately — while it’s always a half an hour wait on a long line at CVS. For just about anything.

But honest to god, that’s what the doctor’s office told me. So all the smaller pharmacies are completely out until the next order. You think maybe CVS did it on purpose?

Eventually, we got this worked out. I’m getting double strength pills and I just have to split them. I already split some of my BP meds, so it’s no big deal … but I had a lot of weird mental issues about CVS ordering ALL the Adderall from the manufacturer. They must have tons of it. Literally tons.

The problem with my regular doctor was far more peculiar. I called, said the medication had worked gangbusters and I was really happy with the replacement and they said they would ship the fax over immediately.

But the pharmacy didn’t have the fax. I called again — both doctor and pharmacy — and the doctor’s office sent another fax and Hannaford didn’t get it.

Because, as it turns out, the fax machine was broken.

Some of the ladies who work in the front office are not tech savvy. They manage to deal with computers, but they always look emotionally and mentally strained. They are sure — always — that something is going to blow up.

I’m very patient with them. They are nice women and work hard. Not everyone does well with electronics, even very smart people. I can do almost anything with a computer but put me in front of a printer or fax machine and my brain dies.

Photo: Garry Armstrong

Their fax machine was broken. That’s why Hannaford didn’t get the fax.

Apparently, they didn’t know anything was wrong until they started getting calls from all the pharmacies in the area that prescription faxes hadn’t arrived. Putting two and two together, they got at least 22. Most of the pharmacies agreed to take the orders by phone — just this once. I guess now they are going to have to (gasp) buy a new machine. Hook it up. Convince it to connect. It’s probably wireless and will only work when it feels like it.

Just like my printer.

So I spent almost all day on the phone because the fax machine in the doctor’s office is broken and they didn’t know it. Apparently, the people at the pharmacy worked through the problem with them.

And meanwhile, my glasses are ready to be picked up tomorrow! Yay! Are things finally beginning to run a little more smoothly? Will we make it to vacation alive? Tune in!

WHEN THEY CANCEL YOUR MEDICATIONS – Marilyn Armstrong

I really wanted to somehow fit this into one of the many prompts going around, but nothing fit. Sorry.


Twice during the past two weeks, medication on which I depend — and could afford — have been discontinued. The loss of Demerol wasn’t a big surprise. It’s an old medication and not many people use it anymore. It was one of the few opioid-type medications I could take. Anything based on morphine makes me sick. Some of them make me VERY sick and cause hallucinations. Once, Dilaudid stopped my breathing and they had to come in and get me breathing again.

But Demerol is not morphine-based, so I could use it.

It didn’t work terribly well. To be fair, it was weak compared to other opioid medications, but my body tolerated it and wasn’t addicted to it. It has been increasingly difficult to get for a while. There was only one company producing it and sometime over the past few months, they just stopped distributing it anywhere. No pharmacy has any. Not even the hospital.

Then, today, the pharmacy called to tell me that Adderall was no longer available, either. That surprised me. A lot of people depend on it for a bunch of different reasons. Children with ADD. Adults with narcolepsy or exhaustion due to constant time changes at work and those with uncontrollable apnea.

And people like me who can’t drive without medication because I suffer from intense road hypnosis. It’s uncontrollable. I can’t tell you how many times I’ve had to pull off the road and sleep only to be awakened by a policeman telling me to move on. Mind you, that’s what I’m legally required to do if I’m unable to drive. It says so in your “learning to drive” manual … but the police don’t seem to get it.

In any case, pulling off the road is not always a viable alternative. I’ve had at least one serious accident because I went unconscious at the wheel. Lucky me, I live here and there wasn’t any traffic so I’m alive to tell the tale. I don’t even know when I went unconscious. Apparently. the car continued to roll forward for some miles before I veered into a tree. Messed up the car. I was afraid to tell the cops what happened because they would have pulled my license on the spot. Narcoleptics — not surprisingly — are prohibited from driving. But I was still working at that point and if I couldn’t drive, I would be in big trouble.

That’s when my doctors started giving me “keep awake” medicine. First, it was something called Provigil, then Nuvigil. Both drove my blood pressure sky high and I’m not sure those two medications didn’t have something to do with my later problems with my heart. Without Adderall, which is relatively benign, those are the only two drugs left … and taking either one of them would kill me. Which means — I can’t drive. At all. While I don’t drive often, I like to know I can if I must. It’s not like I can grab a taxi. There are no taxis here. No buses. No trains. No nothing.

I spent the entire day trying to find some kind of herbal thing that would help. To some degree, Gingko Biloba and Ginseng can help a little, but they don’t help everyone and aren’t dependable. I ordered some Gingko and the theory that it can’t hurt and maybe it will help.

If you are an herbalist and have suggestions, please be in touch! I can use all the help I can get.

I think I’ve found a medication that deals with the pain. At least it did last night and it did it so well, I have to admit it is a major improvement over the Demerol I was taking.

Nothing is going to keep me awake. Once I start to go under, I can open the windows and have the snow and ice coming in. I can literally hit myself in the head repeatedly. It won’t help. I will still become unconscious very quickly. I’m also both a sleep talker and a sleepwalker. It’s all related.

I will also fall asleep multiple times during the day and not even know I’ve been asleep until I realize the show on TV is different. Or the people I was with have gone home. Once I collapsed and fell asleep on the stairs (Cataplexy). I just folded up and was gone.

Why are these medication disappearing?

Because they are cheap. The companies who make it aren’t making a big enough profit. I’m betting these medications will eventually show up again but with new names and a far higher price tag.

So that was MY day. How was yours?

LACKING FINESSE – Marilyn Armstrong

RDP Tuesday – FINESSE

It must be my age. I no longer have any finesse at all. I sometimes get what I want, but it’s more bludgeon than finesse. I seem to have lost my charm especially in dealing with people who tell me “We have to charge $8 to send you a 15 ml bottle of eyedrops for your dog.”

“No,” I said. “You don’t HAVE to charge me $8.00. You have decided to charge me $8. The cost is actually $3 and the plastic bag is another $1. So you’re making a big profit on the shipping. Even if you add another dollar for handling.”

“You could use our auto-delivery service. Then delivery is just $3.”

“Right, but these are eye drops. Liquid. You can’t calculate quite that precisely for a liquid.”

“That’s true,” she admitted. “Auto-delivery isn’t a good choice for  liquids.”

I got her down to $5, which is what it was the last time (mid-May) for the delivery. No matter what she said, there is — not UPS, USPS, or FedEx — NO delivery service who charges that much money to deliver a product so light you might miss it being in the envelope at all.

So where did my finesse go? Down the drain along with the salary I earned.

Pet adoption agencies are always trying to convince you to adopt senior dogs. Gibbs was 9 when we adopted him and at 13, he is beginning to show his years. Going a bit deaf these days. He is less energetic and more inclined to prolonged naps. So when agencies urge older people to adopt older dogs, are they offering to help pick up the costs that older pets will inevitably generate as they age?

You bet they aren’t. No senior discounts for senior dogs or senior people. I’ve lost patience with price gouging. A good finesse used to be a winning strategy, but I’ve never known it to work with any kind of customer service. They don’t respond to wit, humor, or irony. Hit them hard where it hurts and maybe — if you are lucky — you’ll get something back.

If you can convince the company that lowering shipping costs — which are now more than double the cost of real shipping — go for it. Whatever gets the price down.

KILLING PAIN – OUR LUDICROUS LAWS STRIKE AGAIN – Marilyn Armstrong

FOWC with Fandango — Ludicrous

It’s ludicrous. I do not get up at 6 in the morning. But we did today. Why? Because the medication I need is only made by a single manufacturer and none of our local pharmacies have any left. There is a full dose at the pharmacy at UMass, so first we have to go to the doctor to pick up the prescription, then dash off to UMass to get the pills — and hope they saved them as requested AND hope traffic isn’t too horrible.

NSAIDs

Demerol is an old medication, around for at least 40 years, maybe longer. It’s milder than most of what they make today and more importantly, it doesn’t make me sick, which most narcotics do.

So we’re on the run. Again.

Tomorrow we’re heading down to Tom and Ellin’s and I hope the weather is decent! It’s going to be another nutsy week for the retired people.

The problem with NSAIDs

I was pretty sure when this country decided to get rid of opioids, they were going to forget that there are people who actually need them because they can’t take anything else. I can’t take any NSAIDS (Nonsteroidal anti-inflammatory drugs) including ibuprofen in all its many forms, aspirin (in its many forms), Celebrex, Vioxx … or any combination of these packaged in combination a different drug. I can take Tylenol (generic or not), but only 6 per day lest I overload my kidneys. That doesn’t leave me much wiggle room for a lot of pain from this, that, or the other thing.

They have actually improved the glue so they stay on!

I have invested in a lot of 4% lidocaine patches and liquids and surprisingly, it helps. It’s not addictive, either. The prescription strength is 5% and is so insanely expensive, it’s out of my range. I bought it once. It was for me out-of-pocket $488.

If the 4% patches are $20 for 15, how can 30 — on a script — run nearly $500? That doesn’t make any sense. If you want to stop excessive opioid use, how about making other stuff priced so regular people can afford it?

On social security, you only get a certain amount you can spend on drugs. I’m lucky that I’m on a Blue Cross plan that requires no payment for blood pressure medication, which is the vast majority of what I need to survive. But everything else is on my dime and it’s a very little skinny dime. The Demerol —  being a generic — is not expensive. It’s also not available most times and getting less so every day. I can easily foresee a day in the not very distant future when no one will make it and I’ll either have to switch to something stronger and more addictive — or suffer. I’m not very enthusiastic about either possibility.

America is an overkill kind of country. We either give out opioids to everyone by the handful, or we decide no one needs them.

And this works too, but the patches last longer. On the other hand, you can use this in places the patches don’t fit.

People like me get slammed between the pages of their current standards. Which I’m sure will be changed soon enough because there are a lot of people in pain that need help. Pain is actually the second largest subject with which medicine deals. Chronic from a wide variety of causes including men back from battle, people who have fallen off ladders, police officers … and people like me who can’t take what everyone else takes.

It is ironic because regular over-the-counter Excedrin (or equivalent) works better than Demerol. So do most muscle relaxants — but I can only take them a few times a week because I have a long history of ulcers.

The frustration is crazy. I can’t take a lot of things because of the replaced heart valves and the pacemaker, other things because of the ulcers, and many more things because of allergies or sensitivities.

I know I’m hardly alone in this. And I’m sure it will get worked out, but whether it will get worked out fast enough for me is another big question.

And yet I’m not terribly worried because in the end, if this becomes unavailable, we’ll find something else. I just wish it wouldn’t be so damned complicated. Or expensive!

IDIOPATHIC – Marilyn Armstrong

FOWC with Fandango — Idiosyncrasy

I am the proud owner of a body which does its own thing Although I knew the word “idiosyncrasy,” until I got into understanding “doctor-speak,” I didn’t really understand the word.

When a doctor says you have an “idiopathic neuropathy” in your left foot, it means your left foot doesn’t work the way it should and he/she has no idea why. Anything idiopathic in medical language is the equivalent of the doctor shrugging his or her shoulders.

Over the years of my life, many things have been officially idiopathic or, as I prefer to put it, idiotic.

Reflexes that stop working. Sensations that disappear (aka “idiopathic neuropathy”) and later reappear. Idiopathic dizziness, idiopathic raising/lowering creatinine, changing levels of red blood cells, iron deficiency, electrolytes that vanish, then reappear … and the list goes on.

None of these things have ever been diagnosed. All of them eventually went away without medical intervention. Frequently, my hardest act to pull off is not letting them give me medication that is going to give me a whole new set of problems I didn’t have before.

It’s not that I don’t think we all need regular checkups. We do.

But our bodies do stuff. On the whole, a lot of it doesn’t mean anything important. Our bodies adjust themselves, pushing this level up and another down and when it sorts itself out, it settles down. We have become so used to reading stats that when anything seems out of line, this doctor or another feels he or she should DO something about it.

First, they have to figure out what to do and that always involves a lot of expensive testing. After which the result is usually nothing. Sometimes you hear, “You’re getting older” — as if I didn’t know that. My personal favorite: “You should probably drink more liquids.” Thank you for reminding me.

My favorite line yesterday was the nurse who asked me why the electronic blood pressure machine doesn’t work on me. How in the world would I know? Ask the machine or its manufacturer. Read the manual.

Or forget the machine. Take a standard, manual blood pressure reading, the kind every nursing student learns during their first five minutes in training.

EKG setup

It’s why I often wonder why do a dozen tests so they can then tell you it was “a massive yet idiosyncratic drop-off of blood sodium levels” that should have killed you. “It’s amazing you could even stand up.”

Not only did it not kill me, but if they hadn’t called and told me something was terribly wrong, I’d never have noticed anything. It did, as it turns out, finally explain those cramps in my legs and feet.

Electrolyte insufficiency. If I drink Gatorade or any of the dozens of other electrolytes drinks, my legs and feet don’t cramp. After years of pain and agony, the answer was “sports drinks.” I don’t have to take any expensive and likely to kill me medicine, either. Amazing.

Meanwhile, I learned yesterday I still do NOT have cancer (again). My anemia is gone. Let’s hear it for those little, dissoluble iron pills. All my levels are NORMAL, especially for someone who had two kinds of cancer nine years ago, and major heart surgery 4-1/2 years ago.

I’m in fabulous condition — except for the broken spine. the hypertrophic obstructive cardiomyopathy, and the dysfunctional gastrointestinal thingamabob. Also, whatever was making my left eye cease seeing has gone away so I can probably skip the expensive tests they were going to run.

Glass on glass

I probably didn’t have a stroke. Maybe I just need tinted glasses. I absolutely need new eyeglasses because I can’t see very well at any distance except really close up. Maybe I can get the hospital to pay for them instead of $10,000 worth of tests they were going to run.

Just call me idiopathic

MEMORIAL HALLS – Marilyn Armstrong

Every night, I fill up my glass with juice, grab my bag of medications, pet the puppies, and hike the hallway to the bedroom at the other end of the house.

After arriving, I put the bag where it belongs. Adjust the bed to its TV viewing angle. Turn on the television. He watches with headphones while I read or listen to an audiobook. I fire up my blue-tooth speaker. I put my medications into a cup which is actually the lid from a medicine bottle. Convenient and keeps little round pills from rolling off the table.

I never remember everything. Typically, I forget to turn off the fans or the lights. Or something. I sit on the edge of the bed trying to remember what I should have done but didn’t.

“Ah,” I think. “Didn’t change the dogs’ water.” I go back to the living room. Wash the pot, refill it with clean water. Pet the dogs. Assure them they are not getting another biscuit no matter how cute they are.

Back down the hall. Brush teeth. Sit on the edge of the bed. Oh, right. Need to refill the antihistamine bottle. It’s empty. Back to the kitchen where the big bottle is stored. Fending off the dogs, I stroll back to the bedroom with the nagging feeling I’ve forgotten something else.

Ah, that’s right. I didn’t turn off the living room lights. Back to the living room where I turn off a couple of lights. Pet dogs and go back to the bedroom. Garry shows up, having done whatever it is he does for however long he does it in the bathroom. He settles into watching highlights of the whatever sport is being played, followed by a movie or three. I turn on my audiobook.

Forty-five minutes later, I’ve got a headache. I’m not sleepy. Everything hurts. Why are my medications not working? There’s nothing more I can take. Panic sets in.

72-scotties-073016_034

Which is when I realize all my pills are in the cup where I put them. With all the walking up and down the hallway, I never got around to taking them. Which probably explains why they aren’t working.

I laugh. Continue laughing. Garry takes off his headphones long enough for me to explain why I’m laughing. I got to the punchline, he looks at me and says: “You hadn’t taken them?” He smiled. Nodded. Put the headphones back.

As our memory — collectively and individually — gets less dependable, we have substituted routines and calendars. If we do everything the same way at the same time every day, we’re less likely to forget. Alternatively, we may not be able to remember if we did it today, yesterday, or the day before.

Duke’s glorious tail – Photo: Marilyn Armstrong

The other evening, we were watching a show that included a dog. Garry assumes I know every dog breed at a glance. He’s right, usually. I know the breeds, but these days, I may not remember its name. I will usually remember the group — guarding, herding, hunting, hound, terrier, non-sporting (“other”), toy.

The Duke

If I remember that, I can go to the AKC site, find the group, scroll the list and find the dog. But they’ve changed the AKC website, so it’s not as easy as it used to be. I wish they’d stop fixing stuff that isn’t broken.

 

I knew the dog that Garry was asking about was the same as the dog Frasier had on his show. The dog’s name was Eddy. I remembered that. No problem. The breed name was on the edge of my brain, but not coming into focus. I gave up and Googled it.

Search for: “Breed of dog on Frasier TV show.”

Except I couldn’t remember the name of the TV show, either. So I first had to find the name of the show.

Search for: “long-running comedy on TV about a psychiatrist.”

Up popped Frasier. Phew. I could have also found it by looking up that other long-running comedy, “Cheers,” in which Frasier first appeared, but I couldn’t remember its name, either.

One of these days, I’m going to have to Google my own name. I hope I find it.

SURVIVING WHEN YOU CAN’T PAY FOR DRUGS – A GUEST POST

Case Management

When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself.  You need to learn everything you can to survive — legally and, if necessary, illegally.  You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.

Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.

Illustration: NBC News

Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance.  The fight to start COBRA coverage was immediate.  Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act).  There may also be other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.

While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance.  Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company.  They finally offered COBRA and the state came through with payments.  This was the value of a knowledgeable case manager, but the process took time.

A Re-Purpose

The interval during the battle for coverage brought other concerns.  I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out.  That is when I learned about “other” assistance.  This kind of assistance is spoken of quietly by those who are desperate, but can be trusted.  It is the kind of help that takes place all over our region, and probably across the country too.

My case manager told me he might be able to help with some drugs, but not all.  When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed.  He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this.  Ever. I left and kept quiet for years.  The agency he worked at is gone now, and I don’t know what happened to the case manager.

He had gone to a pharmacy that had secretly offered help.  When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser.  This tactic is illegal, but many will run the risk to save lives.

Helping One Another

Not all managers are so resourceful or willing to run such risks.  Strictly speaking, it is against the law — dispensing drugs without a license.  There are individuals in support groups who are willing to assist with drugs, when no one else can.  For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.

In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client.  That agency no longer does this or will even admit they did it for many years.  They could be shut down just like the agency referred to above.

Drugs are collected in many ways.  If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.

The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.”  Those fighting the disease can not imagine throwing out drugs that can help others.  Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.

“Healing those who seek my help”

With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit.  A doctor knows the prescription of a patient and will generally learn in private conversation who needs help.  If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.

The High Cost of Drugs

HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day.  Few drugs have generics and even those are expensive.  The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month.  Patients receiving various assistance programs are terrified of health care “reform.”  Out of necessity, we help each other.

When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken.  I went to a pharmacy, who sent me to a local physician who spoke English.  I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.

Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground.  Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.


People without insurance die.
This is not a political opinion. It is a fact. 

NOTE: Since the author isn’t available to answer questions, comments are “off.”  I can’t answer questions because I don’t have any answers, sorry.