Of course by this time the fluid level is perilously high. So I hunted around for a bucket I didn’t value much, and a plastic cup I could throw out afterward. Both were fairly nearby, since my powder room is on the same floor as the garage (pail) and the kitchen (novelty plastic cup from some sports event). I carefully bailed out some of the noxious fluid –a gallon’s worth at least — to make room for waves from renewed plunger action. I plunged three or four more times, and flushed. I had never encountered an output that resisted the second round of plunging until that fateful moment.
Many of us suffering from chronic illnesses are heartbroken over the death of Prince. Most of us are fans of his music, others also love his ascetic and the mystic of the man that choose to live in Minnesota, not Hollywood.
But most of us are heartbroken as we depend on opiates to help us stay pain free. Because we know Prince didn’t die of opiate use, he died from breaking the law. He died from opiate mis use, which is a crime.
The criminals are keeping so many of us from being able to easily get a drug that we have used safely for years. In my case, I’ve had almost 10 years of opiate use to get me through pain that otherwise would keep me bed bound. Others that take opiates are in end stage cancer, and it is the only thing that works, allowing them more time to enjoy their families and even travel a bit and do those things they love so much.
People with severe arthritis and chronic illnesses in the past were confined to lives of horrific pain. The drugs used to treat in the past, were often also opiates. An older doctor friend said that “They worked well, before morphine and other pain killers, those wounded on the battlefield were doomed to often die of shock from their injuries before we could get them to a hospital.” Opiates help countless others recover from surgeries, that before modern use of opiates would mean the surgery could be successful, but the pain control not, and shock would set in.
When I had a severe case of diverticulitis, the pain was so horrible that in the hospital I cried in pain for two days, unable to even watch TV or read a book. The staff assured me I was getting as much pain killer as I could, and that soon the antibiotics would work. This meant I could have the surgery that would save my life later when my intestines were not suffering from an extreme infection. While I was in pain, I was also comforted knowing that I was undergoing a very dangerous surgery under much more safer circumstances without the infection. The only thing allowing the delay were the extreme pain medications.
So, what about those of us that take opiates?
Well today opiate use is under attack by law enforcement and various states. They see this as an epidemic. They also blame doctors. They are “overwhelmed”, or should I say understaffed and undertrained. The same police that shoot someone as an over reaction to their fears of being hurt, are the same people claiming the only cure for this epidemic is strict enforcement of laws designed to make it harder to get these drugs.
Sadly the only people being punished are those that really need these drugs to function. One friend told me that she saw her grandmother only in bed, since her arthritis had no good treatment. Eventually she said her grandmother simply stopped eating, a slow and miserable form of suicide. No one in the family encouraged her to eat, as they knew her level of pain was horrific. There were no “home remedies”, those snake oil medicines that were mostly cocaine or morphine, there were just doctors that knew some forms of arthritis were a curse, as feared in those days as getting cancer.
So, how are opiates different today?
Well for one thing doctors, not the police, have taken great steps in solving this opiate crisis. My opiates come in a safe long release form. That means, I can’t get a punch from it. Over 12 hours it is slowly released into my system. I feel the pain ease away, and it takes about 20-30 minutes before I can even walk in the mornings. I keep the medications by my bed, ready to be taken. What happens if I take two? I would suppose I get a bit more of a buzz, but it’s still super low release.
Still, what if someone steals my tablets? They will be very unhappy as they won’t get much of a punch. In fact the slow release has little chance of addition. Also crushing the tablets to snort (which is a favorite method for a quick high) won’t work with these pills. There is an additive that means if crushed, cut or broken, the opiate won’t work at all. These new pills, developed to help those with a long term pain need not become addicts, is never mentioned by the media.
My own doctors are appalled at the law enforcement/political plans to deal with this “crisis”. They feel left out of the process. As it is, laws have been passed that I can only refill my prescription on the day it runs out. I have to be out of drugs before I can refill. This often means if there is a snow storm or some other reason I can’t get out, I can’t get my drugs. This also means I can’t drop one or lose one. I dropped one the other day, and ended up having a friend over to tear apart the room with me (I can’t bend over well) to find it, where it was found having rolled under the bed and into a dust bunny. My friend was “throw this out, it’s all dirty.” I was “I have to take it.”
Next up are the laws that say you have to have a paper prescription. So you time everything correctly. Each month I have to go get a paper copy of the prescription from my physician who has never had one problem with her patients and opiates. None. But this applies to all doctors. Instead of going after the criminal doctors, and they are out there selling everything, not just opiates, the police have decided all doctors are guilty. So, often I am driving, or most often someone that can still drive well, to pick up the paper prescription.
A horrible situation arose when I had my prescription ready to go on a Friday, and found my physician had forgotten to sign it. It didn’t matter that for years I have gone to this same pharmacy and filled this same prescription, I had to have a real signature. The doctor had simply forgotten. Her office was closing in 15 minutes. I could not physically drive there and back (her office is about 30 minutes away). She was leaving for the weekend to see her child at college. A fax was no good. This had to be a physical signature.
Finally, after much calling and “I know this law is so stupid”, the head pharmacist and
someone at the company that owns the pharmacy, took pity on me. They knew me, by first name, they knew this doctor had NO issues or problems. She promised to send one over via mail overnight, but for that night, I could have one pill. One pill. Everyone involved knew this was ridiculous, but they didn’t want me to have to spend the night in pain or as would probably happen, having to check into the hospital.
Massachusetts tried to pass a law where anyone on opiates had to go to the pharmacy every 3 days for a refill. Now when I put in my prescription, I have to show ID. I have shown ID being driven by my husband or a family member, while in my pajamas and robe and surrounded by pillows, because if I am flaring, I should be in bed,not in a car at the pharmacy drive through.
My own doctor was livid about this, wondering how end stage cancer patients would enjoy spending their little remaining time driving between their doctors office picking up a paper copy, and then sitting waiting for their pills at the pharmacy. She said “Patients with real needs that had never abused their opiates would spend all their time going back and forth.” You have to show up in person, no matter what your condition, but once a month I can do. Every three days, that’s impossible. But the police and law enforcement were all in favor of this.
That’s the problem, because Prince was given opiates for his hip problem. But the opiates did not kill him. He died as he had people that helped him abuse the drug. If it weren’t opiates, it might have been something else. People say “I was addicted.” No, as with many drugs, opiates are hard to get off of right away, and you ease off with the help of your physician when the time is right. Just try not taking, cold turkey, almost any medication. It’s tough. I know someone trying to get off of her Paxil as she read it can cause dementia later in life. She tried to quit “cold turkey” and was a complete mess. She had to be eased off of it, and another drug which she hopes is safer, introduced.
What killed Prince were his friends and others that got him those opiates. Perhaps he had his staff claim they were in pain and needed short term opiates. These will give you quite the buzz. Money can buy a lot of things. Including doctors that will sell you about anything, including Ritalin to snort. No one is saying “let’s stop using Ritalin.” Paxil does indeed seem to cause an increase in your risk of dementia, as does Tylenol. No one is calling for those to be more regulated. Indeed, one of the most dangerous overdoses anyone can take is half a bottle of Tylenol. There isn’t much that can be done for the liver damage and people that were more into scaring their family with taking an over the counter medication find themselves dead. Mix in some alcohol and you are in for real trouble.
Yes there is an opiate crisis. I know this as I have a handicap tag, not a license plate. Why? Because if you have the license plate, people will break into your home knowing you have a likelihood of having MANY drugs (not just opiates) they can sell. Also I was asked to always use the drive through at the pharmacy. That is because an elderly couple that got their medications locally (at the pharmacy I use) were followed by someone as they left and robbed at the post office in small Spofford Village. Yes crime is around prescription drugs.
But there is also crime around heroin, marijuana, cocaine and other drugs.
There are also cheaper drugs just waiting to fill the void in the United States. Currently Thailand has a inexpensive pill that helps workers put in long days. It’s a necessity for many to make a living. Ya Ba is sold for about $3-4 a pill. It’s a super cheap high, first popularized by long distance truckers. It’s spreading throughout Asia, as it’s a way to keep going even when you are exhausted. It also is a way to party and have a social life after a long day of work. Once this pill invades the US, it will make opiates look like a joke.
The problem isn’t that doctors are prescribing this, it’s that many people do have an addictive personality and also have the money and means to get more of this drug. When they are taken off the medication, not slowly and carefully, they often turn to heroin on the street as it’s the closest they can get. It should be noted prescription opiates are not heroin. Also stolen opiates are often crushed and injected, they are not at all what the person legally taking these drugs is experiencing. If anything, doctors need to know their patients, and also make sure that there is proper care with withdraw from the drug.
When celebrities like Jamie Lee Curtis claim they were “addicted” to opiates after a surgery, what they mean is “I had a really hard time getting off of it, as I possibly would with any medication that is very strong.” She was not on the streets seeking a high from heroin. Anyone that has suffered from Depression, as many with chronic illnesses have, knows that the switching of medications to determine the correct medication for treatment can be torturous. It’s not just opiates that are difficult to do without.
But, politicians and law enforcement, they see all use of opiates as dangerous. The punishment falls on those least able to follow these new restrictions and rules. They don’t consult with physicians and surgeons and hospitals about all the good these medications do for so many, who do not abuse the drug. There are no good alternatives for many of these medications. Punishing the patient is not the answer. Punishing the physician who has to tell the patient, “I have to use this other painkiller that does cause terrible stomach pain, I’m sorry.” What they will do with patients after surgery is not known.
It’s easier for someone to buy and abuse liquor, and indeed we rarely read about the epidemic of alcoholism, than to get opiates. If you are Prince and you have friends and money, you can get this drug. But the drug itself did not kill him. His dependence and unwillingness to find treatment, did. It could have been alcohol. It could have been cocaine. It could have been Ya Ba. As long as there are substances that can alter our physical state, they will be used for both good and bad.
Prohibition did not work. States are figuring out that decriminalizing marijuana is a good idea. Even making it legal seems to be working well for Colorado. California has it so you can sneeze and get the medical use license.
Opiates are the drug du jour. They do a lot of good, and yes have cause a lot of harm for some that have abused them. Overall, imagine war without opiates, hospitals without an opiate choice for those in severe pain, and opiates off the list for people at the end stage of their illness. Pass laws and more restrictions and those that still want it will find it. Those that legally use it and need it, will just suffer in pain with inferior medications, or end up trapped in bed and suicides will jump.
If physicians and doctor, those ones that deal with patients everyday, were included in this
“war on opiates” lawmakers and law enforcement might learn there is a lot that the medical community has already done to make opiates safer. Long term slow release is a comfort to me, knowing I can get the medication I need and have small chance of addition. While getting off these medications may be part of my future if a better treatment is found for my condition, and much surgery done to correct the damage already done, I may be off these drugs. I would like nothing more than to be able to live drug free. But that is not a reality for many of us.
The thought that politicians and not physicians, will be the ones deciding if I live a life of pain, or one of controlled comfort, is one that terrifies me.
Doing Time in The Hole
By Katrina Branch
5) Accept whatever help you can get. For migraine, that means having my kid or spouse bring me my cold flax bags, going in a dark room, and lying very still until the medication has done its thing. If I am away from home when the prodrome (pre-migraine weirdness) strikes, I need to call someone to drive me home. Being in control of an automobile is not safe when I’m in the throes of migraine; and sometimes, when I’m in the Hole.
A guest post by reader Katrina Branch. Katrina is working hard on her professional writing, and I can’t wait to share a link to her newest book. (She’s shared a bit with me and it’s going to be a big success). Byronsheroes welcomes guest posts, and as editor I feel lucky that the site has so many talented writers (many of them professional, I admit to be an amateur). Thank you Katrina for sharing your insight and also your talent as expressing yourself with the readers of the blog!
Sometimes I envy people with a cane. If you are using a cane or have an arm in a sling, people look at you and think, “That’s unfortunate. I hope it’s not bad all the time.” They have sympathy; they can see that there is something medically wrong. If you are slow or late or have to back out of something, they think, “Oh, it’s probably that bum leg slowing her down,” and they are forgiving.
When your medical issue is invisible, people aren’t so kind. They wonder, “Why is she walking so slowly down the grocery aisle? Is she lazy?” They tell you that they are disappointed that you’re late to a meeting; they question whether you value them. Sometimes they don’t say anything, they just stop asking you to do things with them. Even if you say, “I’m so sorry, I’m having a bad day,” they think you mean that you’re lazy or in a bad mood and just need to suck it up.
I may very well be in a bad mood, but I can’t just ‘suck it up’ and be efficient. Some days it takes all I have to just get out of bed and get to the store at all—I’m cruising slowly down the aisle because if I make myself keep walking then I won’t just abandon my cart and go sit in the car and cry. Sometimes the only reason I make it to a scheduled event is that I want to convey that I *do* care, very much, about the person I’m meeting or the group whose activity I am attending. I’m late because I have to actually prod myself to do each little step: Brush teeth; brush hair; put on clean clothes. Eat something, or at least bring a protein bar along in case the blood sugar gets dangerously low. Drink some water. Put on shoes. Get the purse. Put on the coat. Go out to the car—Wait! Go back, get the keys, then go out to the car. Put the garage door up. Back down the driveway, close the garage door. Deep breaths, remember where you are driving to and plan a route. Every step, every piece needs to be thought about, because the auto-pilot most people rely on for daily living is offline for the day, the week, or—in really bad times—the month.
What I hate most about depression is that it’s so hard for normal people to grasp how damned hard it is to function at times. It’s not that I’m ‘not trying’ it’s that I can’t. I only have so much mental focus and energy, and I have a child and a husband. Maybe the dishes aren’t done every single day, but at least we have something to eat off of; my kid gets to school on time; most days I can get dinner made or reheated. I get the bills paid, the cats fed, the toilet paper restocked. Sometimes that’s a labor that Hercules would struggle to complete. When a well-meaning friend says, “Have you researched X?” as a possible mode of treatment, I feel like screaming, “Don’t you get it? I can barely read the comics! I can’t research anything. I can’t think that clearly, and I can’t make that plan and spend so much time struggling through that process. I’m barely able to make myself eat!”
If I developed a limp when my depression gets bad, I think people would look at my hesitant steps and my cane and realize that I’m not always *able* to do what I can do on a ‘good day’. And I have no ability to predict what makes a bad day or a good day happen. I can do certain things that increase the likelihood of a good day: Get enough sleep; get some exercise; eat healthily; take my meds. I can try to avoid things that make a bad day more likely: Avoid some kinds of situations and people that awaken ghosts of dreadful times past. But sometimes for no apparent reason the depression hits like a ninja, maiming my ability to function. I have to limp through the day (or days) until the unseen injury heals.
I hate knowing people think I’m ‘unreliable’ because that sounds like I’m busy playing Nintendo or watching junk TV instead of meeting commitments or helping out with things. I’m as reliable as I can be within the limits of my illness. I don’t want to ever postpone or cancel something we’ve planned; I don’t ever want to not complete something I said I’d do! I want to be on time, on cue, thorough, and helpful. I even want to be cheerful and fun. And sometimes, I can, I do, and I am. But other times—I just hobble along leaning on my invisible cane, distracted and disabled by my invisible injury. It’s not about you, and really, it’s not about me. It’s just depression, and I can’t toss my cane away and jog to the corner by ‘sucking it up.’ I can’t—not I won’t. It’s not a choice, it’s a condition. If I had a cane, you’d understand.
This is the Wheel Life
By Myra Shinkman
Just a little over a year ago, I broke my right ankle, tibia and fibula. I had to have surgery to set it, wore a cast for almost 3 months, and even today, I am still in a wheelchair. These are some of my thoughts about spending this period of time looking at everybody’s bellybutton.
It’s amazing how different the world looks from down here. When I’m outside, what may seem to you an insignificant crack in the sidewalk looks like the freaking Grand Canyon to me. Those little wheels in the front of the chair – they get stuck very easily. Actually, one of the first things I learned for going over any obstacles: big wheels first. Just like the kids’ toy. I really wish wheelchairs came with rearview mirrors. Sometimes I go backwards more often than I go forwards. Almost worse than the cracks are the slight inclines used for wheelchair ramps. I’m in a manual chair, and those ramps are hard for me to get up.
Still, I do manage to do it, but boy I wish the world were a lot flatter sometimes. I hear Nebraska’s flat – should I try moving there? Another thing I discovered being in a chair – is that people are apt to just grab the chair and push you places. Usually without asking first. Oh how I HATE that! I’m still an autonomous human being; ask my permission before you move the chair. If it helps you, consider me somewhat bionic, as in the chair and I have melded into one being. You don’t go around pushing random ambulatory people around, so don’t do it to me. Mmm’kay?
The term, “Wheelchair Accessible,” ain’t necessarily true. Today’s case in point: my mother is in the ICU at a local hospital (she will recover), so I went to go visit her this morning. To be let into the ICU, you have to take the phone off the hook on the wall and talk to someone at the nurses’ desk to get them to buzz the door open. Despite all the ramps, etc., the phone was too high off the floor for me to reach from the wheelchair. I have to ask people to do that for me. Does this make any sense to you? No it doesn’t to me, either.
For various and sundry reasons, I am looking for another place to live. I’ve been searching on craigslist for an apartment share, and I put in the search bar the phrase “wheelchair.” There was one place that looked really great – it was to share a place with a couple of other women my age, it said it was wheelchair accessible, and it was in my price range. When I contacted them, they told me it was on the second floor. In a two-story house. Huh. How is this wheelchair accessible?
One of the weirdest things is that I’ve completely lost my ability to tell how tall people are. If you’re standing next to me, I no longer know if you are a very tall 6-footer or a shrimpy 5’1″-er like me. Very disconcerting because I used to be a very good judge of height. Hey, I don’t mean to gripe about this too much.
There are actually some perks to being in a wheelchair: you don’t have to wait in line at a restaurant. I tend to get a table right away. I guess it’s bad “optics” to have a wheelchair-bound person sitting outside the restaurant trying to get in. If I drop something, people from all around rush to pick it up for me. Never mind that I have no problem picking things up off the ground – it’s my right leg that isn’t working, not the rest of me. Still, it’s nice, and it’s good to see young people in particular being so thoughtful. Ditto for being at the supermarket. I just have to look up longingly at something on the top shelf, and people clamor to help me get it. It’s kind of nice, actually. I didn’t get this much attention when I was standing on my own two feet, just being short.
I hope one day fairly soon to be out of the wheelchair. Maybe I’ll need a walker, maybe I won’t. Apparently, I have some form of diabetic osteoporosis and keep breaking bones, so being careful will be my motto for the rest of my life. Standing or sitting, i intend to enjoy my life as much as I can. So, if you see me rolling by, give me a wave. And if you block my view to anything, expect to be stuck in the back with a pointy stick. Cheers!
When I was first diagnosed with Hashimoto Tyroiditis disease I was prescribed medication to take everyday. Before that diagnosis, I only pill I took daily was a vitamin D tablet in the winter. Here in New England, almost everyone is diagnosed with low D during the winter months.
Now I look at my vast array of medications and wonder “All these can’t be good for me!” I have since had a diagnosis of two types of arthritis (one can make you blind overnight!) and Type Two Diabetes (medication induced). The amber bottles of pills keep growing.
My medications a combination of drugs to battle the chronic illnesses, and drugs to combat the drugs that combat the chronic illnesses.
Side effects need their own drugs it seems, but these drugs also have side effects.
So, if you are like me you have more than once thought “I wonder if these medications are making me feel ill? Maybe it’s not the disease, maybe it’s the medications!” Less is more is my thought, and my insides make horrible noises most of the day in rebellion against the medical onslaught. This just doesn’t seem right, or even good for me.
I decided that the one doctor I trust the most and I needed to have a little talk. So, I took a list of my medications, and asked her “Why am I taking each of these? Are there any I can cut out, or work toward cutting out?”
It was a very good conversation.
First off, I wasn’t taking many of my medications in the optimal way. My thyroid medication is a bitch, I need to take it on an empty stomach. Problem is the other medications need to be taken with food. My solution was waking at 2am and just taking them. The problem is, they work best if taken on an empty stomach with a glass of water. Not a sip of water in the middle of the night.
We talked and came up with a solution. I now take the pills first thing in the morning with a water bottle I keep by the bed. Then I wait 20 minutes and take my arthritis medications. I’ve noticed a difference in how I feel throughout the day.
My doctor also went over timing for my other medications, what I should drink and eat (I wasn’t nearly drinking enough for many of them). She reminded me, I have a more than one serious illness. Several, as most people with an immune disease, have more than one serious illness.
Some of my medications are common for people my age. The statin is needed as my family has unusually high cholesterol. We just do. Even the vegan weird hippy cousin, she’s delightful, but she’s on a statin.
Also going over my side effects with her was very important. Side effects can be very dangerous, and she suggested a new pill to help with my stomach complaint.
Did I get to drop any of my medications? No. I’m still not happy about the number of medications. But, as she reminds me over and over “You have several very serious illnesses.” People with serious illnesses take a lot of medication. Just because it’s an “invisible illness”, meaning I look fine, doesn’t mean it isn’t truly dangerous.
I have a friend that complains her husband refuses to take his blood pressure medications. She is upset, but not enough to really make sure he takes them. She jokes “If he has a heart attack it will be his fault!”
He’s proud he doesn’t “take pills”, he says he feels great. He’s thin, he rides his bike, and he “eats right”. The blood pressure cuff of course doesn’t know any of that.
It’s hard when you don’t LOOK sick, but I imagine it’s even harder when you don’t FEEL sick, to take your medications.
But, while I am still unhappy about the number of medications I take, and I want to cut down, I’m happy I did speak to my physician about each and every one.
WHY am I taking this
WHAT does it do
WHICH side effects do I have (and how can we treat them?)
WHEN can I stop taking this (maybe never?)
WHATEVER can I do to perhaps get off this medication?
HOW do I take this medication to get the most out of it
Also, if you are having a problem with one medication (and how to figure out which one can be hard), see if there is an alternative you can try. There usually is and often you are much happier with that alternative!
My husband is upset and worried. He knows of course that I have a 2 serious forms of arthritis. He knows I take serious medications to control not only the inflammation but the pain. He knows these medications have serious side effects, the worst being horrible intestinal pain, and that there is an ever present danger of ulcers.
He understands that I often spend part of the day or night hugging a heating pad and crying in pain. There is the acid burning and trying to sleep slightly upright to keep the acid reflux down. There are prescriptions for Prilosec, that don’t work well.
He knows all this, but I’m still here.
Then he read about the death of Glenn Frey, musician and member of the Eagles band.
He understand that these horrible immune diseases are going to kill me sooner or later. Unless I’m hit by a truck or some other disease carries me off, this is going to be on my death certificate.
The problem was his reading the details of Glenn Frey’s death. The long term hospitalization. The induced comas. The side effects killed Frey, and it wasn’t pleasant and it wasn’t quick. The number one death of RA patients is ulcers and side effects from the medication.
Frey worked out, he was a “workout warrior” to keep his RA in check as much as possible. I unfortunately do not have enough control over my disease yet to be a “workout warrior”. Gentle walks are a huge step up for me. New medications are helping a lot, but my case is far more serious than that of Frey. Working out is not an option. That was huge, because my husband believes I am “doing fine”… or as fine as it is possible with this serious illness.
Frey had his disease for 15 years. Mark sees this as perhaps only having me for only 10 year more, and possibly less. That scares him.
What scares me is the sort of drawn out death of months in the hospital. I truly dislike being in the hospital. It’s depressing, it’s boring, it’s often painful and it’s scary.
So tonight when I had a terrible attack of acid reflux and pain, he was upset. Because he sees this as a hint of how our future is going to end.
We then remind each other, that much of the time we are happy and doing well. That there are the gentle walks with our dog we enjoy so much. The movies we watch together and enjoy. The decorating of our new one level home, which we moved to knowing that one floor living was important for my safety and comfort. There are many good times yet to come. Most people don’t have a very pleasant or pain free death.
Those of us with chronic diseases understand much like Frey, our fates were sealed with our diagnosis. It’s how many years, and the quality of those years. I hope that I can keep my focus on the good times, and keep my husband’s focus on those good times also.