Body Issues

Rant: $13 a Pill is Still Ridiculous

The internet has been alive in the last few days with regards to the hedge fund manager who raised the cost of a pill from $13.50 to several hundred. People were outraged, his email was made public, and the anger even received news attention. The public outcry was so great, that the businessman involved returned the price back to normal, or so it was recently reported.

The pill in question, was widely reported to be an HIV drug. People could understand that most people with HIV would never be able to afford such a dramatic increase. There was discussion and outrage over how many people would die as a direct result of this unfair price increase.

I’m glad the outrage happened, and I am glad that the discussion came up, but what surprises me is that in all the commentary, no one pointed out just how ridiculous the original cost of the pill already was. $13.50 a pill, for a pill that needs to be taken daily amounts to almost $5000 a year. That’s over $400 a month. What’s more, this medication isn’t even a treatment for HIV. Rather it is a prophylactic for some of the opportune infections suffered by people with compromised immune systems. The drugs that treat HIV can be even more expensive. There are people dying because of the costs NOW.

It’s not just HIV treatments either. My own medication Remicade, even in Canada, costs $1000 a vial. I take 10 vials every 6 weeks to treat my Crohn’s disease. That’s $10,000 every six weeks. I had to apply for special coverage for this medication from the government. A program called Trillium that gives prescription coverage to low income people. The problem is that they get to decide whether or not I get my medication. Because Remicade is still on Patent and being studied, there is a coordinator who has to have special forms filled out every year to evaluate whether or not the government will continue paying for it.

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Pain is my Reality

I think what people fail to comprehend is that I exist in a state of constant pain. I literally cannot remember what it feels like to not be in pain, assuming such a moment ever existed for me. I even experience pain in my dreams.

When I say that I am doing well, or that I am feeling good, what I mean is: my symptoms are currently in a consistent enough state to not register as especially noticeable.

I think an inability to understand that is part of the massive divide between medicine and patients. If a doctor doesn’t understand that this is what I mean when I say I am feeling ok, then how can I explain anything else? When I’m dancing and singing, and laughing, and loving, and teasing, I am doing all that while also being in pain.

The realities of someone who lives with a chronic illness, where pain can just as easily be replaced with nausea or some other symptom, is impossible to conceptualize for someone who hasn’t experienced it themselves. It’s antithetical to the way humans comprehend our reality. We can’t grasp of infinity so trying to comprehend constant unending pain, it’s impossible.

When people try they immediately get overwhelmed with the futility of it all and feel despair. So the assumption is that our lives must therefore always be despair and if they’re not, then we’re lying, but if they are, why don’t we just end it all?

When I say that I have to embrace the reality that I might never get better and see a cure, I’m not being negative. Accepting that reality lets me survive because otherwise, it would be overwhelming despair. It’s not a personal failing, it’s not that I haven’t tried hard enough to get better. This is just my reality.

I understand that for you, that sounds like giving up, but accepting that limitation has been the biggest step in being able to move past. Accepting that this is my reality makes it possible for me to make the decision to self-care. It makes it possible for me to accept that my illness, my existence, is not a personal failing. It is just the way things are.

Sometimes hope kills.

I don’t have the time or energy to spend hoping that I will get better someday. Energy spent hoping of a someday is energy that could be used to improve my circumstances as they are rather than how I want them to be.

It means accepting that “toughing it out” is a waste of energy that could be better spent medicated and doing something I enjoy.

Post Hospital Syndrome

NB: This post is supposed to be an overview of what it feels like post admission, and not a description of any specific condition which may or may not be known by this name.

As those who follow my Facebook feed might know, I spent the last few days admitted to the hospital. The persistent Crohn’s flare which has been plaguing me for the last few months finally wore me down to the point that I went to seek help. I wasn’t expecting to get admitted. The medical marijuana I have been smoking has been keeping me from getting as bad as I have in the past. Mostly I was hoping to get some prednisone, go home, and hope things improve.

Then, something unexpected happened, they actually took me seriously. The ER doc called for a GI consult and the moment she saw me throwing up bile into the garbage she told the nurse to give me some gravol and admit me. They would put me on IV steroids until I was stable enough to take it orally.

I was in the hospital for five days and now I’m back home.

Coming home from the hospital is always an experience. After days of being locked up in a little room with no privacy and yet insufficient human contact, it feels like you are somehow outside the flow of things. Like you exist in a space outside of the rest of the world, and your day is spent trying to figure out how to rejoin the flow. It always such a surprise at how exhausted I am post admission.

I laugh that I feel like a day old kitten, but the truth is that it’s not a joke. My hands shake, and I can barely carry my own bag. The doctor once told me that it takes about one week to recover for each day you spend in the hospital. It seems like a lot. After all, didn’t I just spend the last five days sleeping most of the day?

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WHY YOUR ADVICE TO CHRONICALLY ILL PEOPLE IS CONDESCENDING AND VICTIM BLAMING

It’s inevitable, if you are chronically ill people can’t seem to run over themselves fast enough to offer some advice regarding what you should do to get better. Whether it’s family, friends, coworkers, or perfect strangers, it seems everybody has heard of some amazing new miracle cure that is sure to help you. Even if they hadn’t heard of your condition until five minutes earlier.

“Crohn’s? What’s that? Oooooh. Hey I’ve heard that people fix digestive issues with by giving up gluten, have you tried that?”

We know you mean well. It’s instinct, you see a problem, and you want to help fix it. But it happens time and time again. What started out seeming sweet soon becomes just a constant reminder that everyone thinks we’re incompetent.

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HOW ADHD SHAMING ALMOST KILLED ME

TW: Discussion of Depression and Suicidal Ideation, descriptions of self-harm.

Just getting diagnosed with ADHD was a struggle. I remember the doctor I was seeing at the time giving me a lecture about drug seeking behaviour. When I pointed out that there were easier ways to get drugs than trying to get an appointment with a psychiatrist she relented but asked me why I wanted to be diagnosed if I wasn’t in school anymore.

The cultural perception of ADHD is that it is just a matter of too much energy. You hear all sorts of people extolling the virtues of good old fashioned exercise, or warning people about the dangers of giving children drugs similar to amphetamines. No one takes the time to think about how medications work. This is evident when they start talking about Ritalin or Concerta being the sit down and shut up drug.

ADHD changes the way you think. Not what you think, but rather how you think. It falls into the category of brain conditions that are considered neurodivergent.  It also has a high rate of comorbidity with autism. It’s not just “undisciplined” or “lazy” kids who need more exercise, it causes structural changes in the brain and can even impact how you react to different medications.

Most people however still have a hard time believing that the condition even exists.

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Dear New Crohn’s Patient: What they don’t tell you

Growing up, I had never really heard of Crohn’s. In my first year of university, my friend told me about her ex who had the condition. She told me all about how he was in constant pain, was in and out of the hospital. She told me about how difficult his life was and how there was little he could do, mostly because he was too tired or in too much pain.

So understandably, when a doctor first suggested the possibility that all my problems were linked to Crohn’s disease, I was thrown for a loop. I knew next to nothing, and what I did know was not good. It didn’t help that the diagnosis has basically been yelled at me at the time. I was in shock. I was afraid. I thought my life was over.

What does having Crohn’s even mean!?

What is Crohn’s? – from a medical point of view, Crohn’s is an autoimmune disorder, like allergies or arthritis. Autoimmune disorders refer to a class of illnesses that result from your immune response mistaking a part of your body for a foreign invader. The antibodies attack this part of your body resulting in swelling which in turn causes a variety of related issues. In the case of Crohn’s disease, the antibodies can attack any part of your digestive system from your mouth to your anus, however, the majority of the disease is often centered on your colon and large intestines.

What does this mean?

The obvious result of this is pain resulting from the swelling. It also causes nausea as your body struggles with passing food. It may result in blockages of the intestines, and often leads to IBS like symptoms such as frequent diarrhea and watery stools. Swelling of the intestines makes them delicate and liable to tear. Many of the symptoms of Crohn’s are related to the resulting ulcers that appear.

What no one tells you is that is also causes exhaustion and chronic fatigue, it can cause your joints, and persistent inflammation can also lead to memory and recall difficulties. No one tells you that you will get used to the sight of fresh blood in the toilet. You will become sensitive to smells, like a person experiencing morning sickness, certain smells will have you running for the bathroom.

Most people learn early that Crohn’s often leads you not to absorb digested food, for some reason however, no one thinks to mention that for a lot of patients, you also stop absorbing oral medication. In the midst of a flare, anything you take orally may not work at all. This includes of course, any pain medication you are trying to take to get rid of the pain of the flare you are experiencing.

Saying hello to Crohn’s means saying good bye to trusting doctors while also being completely dependent on them.  You are a Zebra in world where they only really know horses. Not even zebra, more of a rampaging moose that gets named a zebra by someone who has only ever seen a horse. While you are at it, say hello to endless ridiculous suggestions about things that will absolutely cure you! They won’t.

No one tells you that anything that wakes up your immune system: allergies, a cold, if you menstruate, any of it can make your symptoms worse. Whether it is actually making them worse or they just feel worse because of everything else that is going on I cannot say, but I do believe it is not unrelated.

No one tells you that, no matter how extroverted you are before the diagnosis, when you are flaring your energy for socializing wanes dramatically. All you want to do is sit at home and watch TV or Netflix, or movies, just something low energy. You break invitations, because you just can’t know in advance if you will have the energy that day.

No one tells you that you will feel guilty for being sick. You might feel like a failure. This is normal. Many of us struggle with feelings of guilt. You are not alone, and let me repeat that it is not your fault.

We live in a world that prioritizes productivity and tends to dehumanizes people with disabilities. Living with Crohn’s means crossing over to the other side from normal to not.

No one tells you these things, and because they don’t they also don’t tell you the tricks that we learn over time.

Pot.

I know I know, I’m starting to sound like a broken record. But honestly, I never would have looked at the stuff if not for Crohn’s and this is the case for many people I know. One eager little smoker I know grew up Mormon, and was positively terrified of the stuff. Now her still Mormon mother encourages her to smoke thanks to the relief she gets. That’s all I will say on the subject.

If you don’t want to turn to herbal treatments, *aren’t I hilarious!?*, there are ways that you can make prescription pain killers work when a flare makes absorbing them difficult. While this method needs to be used with care, you can grind up some of your pain killers and put them under your tongue. The veiny mucous membrane allows some of the medication to seep direction into your blood stream without needing to pass through your inflamed digestive system. It is advisable to use only a portion of the full dose at a time, since this method is a bit more direct than traditional digestion.

Some medications are also available in liquid form, although for some reason doctors often fail to mention this. You can request liquid dilaudid for example, which has more chances of success than a pill.

While alternative treatments are mostly bunk, there are some otc things that can help you get through a flare. Baby wipes with some witches hazel for example, help prevent your sensitive regions from chaffing horribly from the frequent bathroom trips. Also, don’t be afraid of baby rash creams.

Anaesthetic hemorrhoid ointment is a metaphorical godsend! The anaesthetic helps the whole area calm down when the inflammation gets particularly bad. In some places you have to get a prescription for it, but sometimes you can get it directly from the pharmacist.

Heat can be a great help. Warm baths can soothe all sorts of pains and cramps. If you are particularly dry because of dehydration, you can add some Aveeno bath oil to come out well oiled. A heating pack placed on your abdomen can help a lot in this regard. Ones like these, though of course you are welcome to explore other varieties that work for you.

It can be helpful to have a little emergency kit you carry with you: a clean pair of underwear, some wet wipes and lotion, anything that might make the experience of having an attack in public easier to deal with. They do often tell you this, but it helps to mention it anyway. That, and they won’t tell you to also pack a high tolerance for humiliation, some excuses as to why you are throwing up in public (Morning sickness works pretty well), and also the knowledge that most of the time, you are actually the only one who knows even though it feels like everyone is staring.

That’s something you will develop with time. Living with a disease like this changes you. It makes you learn more about yourself than you ever knew before. Your tolerance for things that others would find unbearable will raise exponentially. You develop a strength that cannot be understood by those who haven’t been through something like this.

This strength is there regardless of whether you feel strong or not. Regardless of whether you are bearing up well or not. Regardless of whether you are working and productive, or whether you are curled up in your bed determined never to get out. Whether you bear everything with stoicism and grace, or whether you go shrieking and weeping. No matter what, you have strength, and you are allowed not to handle it sometimes. You are allowed to have bad days. You are allowed to complain, and whine, and to be tired, and to take care of yourself.

Self-care is essential, because ultimately, the less stressed you are, the more time you spent making sure you are ok, will actually make your symptoms, if not better than at least, less exhausting emotionally.

Crohn’s mean that not only do you have a bad ass, you are a Bad Ass!

Welcome to the club Crohnie.

Hospital Limbo

It pains me (ha! Get it?) to admit that I am in the midst of a Crohn’s flare. If the increased pain and nausea weren’t a dead giveaway, the swollen ankles and wearing a sweater on a day that was 30 degrees (that’s high 80s for you Yanks) make it kind of hard to ignore.

I really am not shocked. I suspected something was up when I realized I was blowing through my faced with the difficult decision of whether I could go without my meds or whether I should risk supplementing my prescription just this once with herb bought illegally. Of course with the Colorado trip having drained us financially, I may well face that decision anyway this month. If you are willing to donate a little extra this month to our paypal, we would be extremely grateful. Or get something from my Etsy store! Yes, it is that kind of month. Please consider helping. 

For most people, the decision of whether or not to go to the hospital is a relatively easy one. You are in pain, your leg is broken, the division between “well” and “need assistance” is clear. Yes, there may be some vacillating when you are sick, but the idea is still, there is a clear sign when something is wrong.

For people with living with chronic illness, it can be hard to tell when you are just experiencing worse symptoms or when you need hospital assistance.

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