Body Issues

I almost died last week.

CN: Descriptions of withdrawal, hospital admission, medical symptoms and needles.

It wasn’t an accident, or even a sudden onset of something like appendicitis. No, my brush with death came about as a result of fear. Specifically, other people’s fear. Fear of addiction, fear of being wrong, and fear of being fooled.

You see, the week before I was admitted with Crohn’s. I went to an appointment with my Gastroenterologist and he sent me straight to the ER. I was admitted, and put on high doses of Dilaudid, after the usual adjusting games where they started me on 1mg every 6 hours, before finally conceding that 2 mg every 4 was what was needed. In addition to that, I had Gravol and Benadryl to control the various side effects of the opiate.

I spent the week essentially zonked out after several weeks of increasing pain and nausea, and a trip to the ER every 2 weeks since Christmas. My admission came on the heels of two weeks of being sick with a sore throat, which kept me not just from being able to take my Remicade, but my medical marijuana as well. My throat hurt too much to handle the irritation from the smoke.

My crohn’s had gone into overdrive. I wasn’t digesting, I was in pain, and I needed help.

The reason the doctors agreed to finally treat my pain properly is that I told them, that once I got home I wouldn’t be taking dilaudid anymore.

Not one doctor stopped thinking about their fear of addiction long enough to hear what I was saying and remember their training. (more…)

Girl Pattern, Boy Pattern

Parents who want to do right by their children have a lot on their plate, and I do not envy their task.  It is far too easy for even the best of us to end up duplicating the errors that were inflicted on us, or picking up new ones from parenting trends with little basis in reality.

One reality that many well-meaning parents don’t know how to acknowledge is how to make sure that their children don’t fear disclosing their membership in gender and sexual minorities.  This society is hideously transantagonistic, and children notice this well before they have a word for it, and that can make them scared even when they shouldn’t be.

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Children and Disability

Ever since I turned 27, the thought of children has been on my mind. At 28, I am now a year older than my mother was when she had me. I always thought that my life would go a certain way. I would get my degree, get married, start a career, and have a baby. All of this was supposed to happen before I was 30.

Then I got sick, and one by one those dreams went up in flame.

I couldn’t go to medical school. Not only that, but I might even be able to manage a regular job let alone a career.

I got a degree, but unlike I expected my whole life, I am graduating with a bachelor with no idea of when or if I will ever be able to get more.

Some things changed, but not for the worse, just became different. Instead of a husband, I have a wife. The important part of that: the love, the support, the companionship remains the same. We live in Canada for now, which mean marriage for us is possible.

And then there are children. (more…)

Robbing Peter to Pay Paul

Growing up I used to hear this expression a lot from my singing teacher. It usually meant that I was doing something with my throat or voice which, while sounding good at the moment, could do long term damage to my vocal cords. I’ve been thinking about this expression a lot lately.

Ever since it came up during a discussion with friends. I was explaining how some of my medication I seemed to take in order to deal with the side effects of other medications. The conversation turned into a discussion of side effects and I mentioned how almost all of mine have increased risk of cancer listed. I joked that the meds I were taking risked me dying a slow and painful death, however I take them to avoid dying a slow and painful death now.

I joked that I’m robbing Peter to pay Paul. (more…)

Sometimes the Cure Really is Puppies!

For the last several months, I have been dealing with increased Crohn’s like symptoms: an increase in pain, in nausea, and in extreme exhaustion. All the tests however are coming back normal. It’s possible that one of three things are going on:

  1. The symptoms are being caused by my IBS instead of my Crohn’s.
  2. My Crohn’s is active in my small bowel and we need new tests to detect it.
  3. I am one of the percentage of Crohn’s patients who have symptoms but the location of the disease is hard or impossible to find. Crohn’s sometimes likes to hide.

The doctor’s advice was for me to “take it easy” in the hopes that less stress will mean less symptoms. This is especially the case if the bulk of the symptoms are the result of the IBS. The problem of course is that in terms of stress, I am already on disability. I don’t work in the traditional sense, though I would argue with anyone who would try to say I don’t work. (Ever try to make 70 hats in under a month? Ever write a book?)

Most of my stress comes from the poverty that comes with being on disability. I live on a fixed income that was fixed long enough ago and hasn’t accounted nearly enough for inflation. I live on an income that depends on me having to make additional money but not so much that they start docking my support. My anxiety fixates on things, sometimes legitimate and sometimes not. In addition my depression sets off my anxiety.

If I can’t actually make more money and money is the leading cause of my stress, and I’ve already done as much as possible to relieve other forms of stress, what else is there?

I’ve looked at the problem extensively, and a thought emerged. You see, whenever I am around someone’s anxiety service dog that dog responds to me in a way indicating that they want to alert me. More than once, I’ve been alerted to an anxiety spiral by a dog on multiple occasions. When that happens, my sudden awareness of what is going on helped me work on therapy techniques to draw me away from the spiral.

It makes sense. When you live in a circumstance where some measure of nervousness and worry is justified, how do you differentiate regular worry from pathological anxiety?

For some time now, I had been considering the possibility of a service dog. The biggest barriers always seemed like a lack of easily accessible information, and an assumption that the costs would be prohibitive.

Then a little bit of luck came my way. I met a wonderful person who not only had an anxiety service dog, but had gone through the process herself. Her animal is what is called an owner-trained service animal, a designation that is not allowed in some places but luckily is in Ontario. Now, I am still learning what there needs to be learned, but I can say that an owner-trained service dog is NOT a fake service dog. It is simply one who was trained by the owner rather than by a specific program however, they both need to meet the same level of qualifications.

This person was willing to help me and let me know how to go about it.

With the consultation of my friend, and the pressure from my increasing symptoms, it seemed as though we were being pushed in that direction. In addition, our dog is starting to age and it getting to the point where a younger companion could do a lot to keep her in good health and extend her life. The final decision was aided with a promise from my parents to help with some of the costs in the form of a Christmas present.

We decided to give it a go and early this week we welcomed CJ (After CJ from West Wing) to our family.

Our choice of breed was dictated by a series of considerations:

  • Our home
  • Our lifestyle
  • My ability to handle certain weights

All of these considerations pointed us to a small dog. Toy breeds are also very attuned to humans since they grow up in much closer contact with people than other breeds.

My friend helped me administer a temperament test more than once, one based on one of the recognized assessment tests out there.

I will be writing about the process while I go through it. But first…. Puppy pictures!

Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy

It’s All in Your Head:

The false dichotomy between physical and mental illness

It used to be thought that different illnesses were the result of demons and evil spirits. In the bible for example there are instances of epilepsy that are treated as demonic possession. As physical explanations were found for different disorders, the supernatural explanations were abandoned in favor of scientific ones.When it comes to mental health disorders however, physical explanations are harder to grasp and find. Not because they don’t exist, but rather because a lot of brain related research is either not possible with our current technology, or must be undertaken with great care for ethical reasons.  As a result, our society has created a separation between physical illnesses and mental ones.

On some levels, this separation make sense. When we think of physical illness or disability, we think of some physically embodiment. Take Crohn’s for example: with the right equipment one can point to the inflammation and ulcers in my intestines as an explanation of why I am feeling the way I am feeling. With mental illness, however, a lot of times we are dealing with something a bit more intangible: emotions and thoughts.

This separation is a false one however, that actually creates a lot of misunderstanding and harm. Because we see mental illness as dealing with something intangible like emotion, there is a social perception that mental illness isn’t real. That it is “all in your head”.

The truth is that mental illness is as much a physical thing as any other illness or disability. The brain is as much a part of the body as a leg or intestines. Depression, anxiety, and other such conditions may manifest themselves in part as emotions and thoughts, but those are expressed symptoms of underlying conditions in the same way that pain is an expression of inflammation or injury.

Moreover, it ignores the fact that all perceptions are “in our head”. If you consider pain, for example, while our bodies processes the injury causing the pain at the point of injury, the actual experience that we call pain is processed in our brains. This doesn’t mean pain doesn’t exist. In fact, we know that pain not only exists, but it is necessary for our survival. We know this because of individuals with CIP (congenital insensitivity to pain), a condition where people cannot feel physical pain. People with CIP need to consistently measure their body temperature and be very careful because it is possible for them to injure themselves, like break a bone, without realizing it.

Every tactile experience, every visual one, every auditory one is processed “in our heads”. If you say that mental illness isn’t real because it is “in your head” you are essentially saying that every experience we have isn’t real. Our whole lives are lived in our heads.

There are physical symptoms of mental illness as well. Many people who have depression experience joint pain, as well as fatigue. Anxiety can cause your blood pressure to spike, can cause chest pains, nausea, acid reflux, and a whole host of other symptoms. There is absolutely a physical component, so treating it as if it is something separate ignores important aspects of mental illness.

Moreover, treating mental illness as separate from physical illness or disability, ignores the fact that physical disabilities and illnesses often occur in conjunction with certain mental illnesses. Specifically, many people with disabilities have more risk factors for depression, anxiety, and PTSD. This can be the result of the imposed social isolation that many people with disabilities experience, or in some cases may be a result of their illness. For example, Crohn’s Disease, in addition to the pain and physical symptoms that can increase the risk of depression, the inflammation of the intestines can also lead to a lower absorption of Vitamin D which can result in depression.

Because physical and mental illness are treated as separate, those of us with disabilities are not given adequate access to mental health care. In an ideal world, every person with a chronic illness or disability would be given access to a mental health professional who would manage their mental health in conjunction with their physical health. The connection between the two would also make it easier to argue for social contact as an accessibility need.

The way the world is set up now, people with different types of disabilities experience social isolation as a matter of course. This can be as a result of symptoms, or often as a result of insufficient accessibility. Because mental health and physical health are seen as separate, the idea that disabled people are prevented from being able to socialize effectively due to barriers such as transportation or even just on-site accessibility, is not seen as a big deal. Government officials see closing down programs and businesses that encourage and enable disabled people to socialize as risk free. People feel the need to vandalize playparks that are set up to be accessible to disabled children.

The false dichotomy is actively harmful to all disabled people. It enables people to ignore the needs of the mentally and the physically ill. It is meant to divide and shame. It is meant to pit us in false competition with one another, in the hopes that it will distract us from the systemic ableism that is so ingrained in our society.

Your Transantagonism is also Ableist

Recently Ophelia Benson added to the TERFY hole she’s been digging by tearing into an abortion provider who chose to use inclusive language when discussing issues surrounding pregnancy and access. It’s an issue that comes up surprisingly often. The discussion around genitalia is so needlessly gendered, that people often fall into the trap of equating body parts with identity.

The equation of women with “having a uterus” or the ability to have children is obviously exclusionary to both trans men and trans women. Not everyone who can get pregnant is a woman and not every woman has the ability to get pregnant. It is also exclusionary to many of us with disabilities.

The social equation of women with having a uterus is extremely damaging to women who, for one reason or another, have lost their ovaries, or uterus. Many of them struggle with feelings of inadequacy or identity loss for this reason. Harmful concepts, like those established by patriarchy and outdated feminist concepts that reduce women to their genitalia, only make the struggle more difficult.

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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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