I Can’t Move On, It’s Not Over Yet

I cant move on, it's not over yet imposed over a blurry picture of a frozen winter landscape
The type of writing I do, the type of people I connect with, I tend to come into contact with a lot of people who are struggling with medical systems. Because of my own experience navigating these same systems, as well as because of the way some of my areas of privilege align – and sometimes not even privilege but just random chance that turned out well, I have also been finding myself more and more acting as a patient advocate for people.

This can mean helping someone find a doctor, helping them come up with questions to ask or ways of phrasing things, making phone calls from location to location, and sometimes even showing up to physically advocate for someone.

There are many people who I have been able to help in some small way and it was enough for them to be able to move out of trouble enough not to need me anymore. There is one core group of people, however, who no matter how hard I advocate, what strings I try to pull, what privileges I bring down to bear, I never seem to manage to get through to their primary caregivers enough for them to start receiving the help they need. Continue reading “I Can’t Move On, It’s Not Over Yet”

I Can’t Move On, It’s Not Over Yet
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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. Continue reading “I almost died last week.”

I almost died last week.

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.

Pain is my Reality

Dear Doctor: A Response From A Patient

Dear Doctor:

Thank you for your letter. It is rare to hear a doctor acknowledge that our knowledge is valid and that we are not imagining how doctors treat us. Thank you for validating that experience. I appreciate your candor. But I still have a problem with your letter, and it’s this: it is still all about doctors and their ego.

I know my disease scares you, it scares me too. Actually it terrifies me.   Except at the end of the day, you get to stop thinking about it, usually shortly after I leave the office, whereas I am stuck living with the consequences of your fear.  Your fear, which has nothing to do with me. It’s not about being afraid of what I am going to have to deal with if you fail, it’s not about making me feel better. Your fear is about the fact that my disease makes you not feel infallible. It’s about your fear that I might not be as in awe of you as I would be if you could fix my problem quickly and easily. You are afraid that you will lose some of your power.

Yes, some of you might genuinely feel bad that you can’t help us, but for many of us, on this end of things, the truth feels closer to the idea that you don’t actually care about us at all.

One way or another, our disease scares you, but we are not our disease. We live with it, we fight it same as you. We are not supposed to be your opponent, we are supposed to be partners in this fight. You are supposed to be our support, and yet over and over again you let us down. I have multiple friends who have undiagnosed pain conditions. Some have received at least the comfort of doctors’ suspicions as to what might be wrong with them, while others have doctors categorically deny that anything is wrong. Some go years without any idea of what is wrong because doctors have neglected to tell them anything.  I have heard countless stories of patients who have been actively barred from getting answers all because of some doctor’s interference.

I myself have had doctors tell me that they were sending me home because they didn’t know what tests to run, on multiple occasions. I have had doctors disregard my pain as just something I should be used to by now. I have been denied treatment, all because doctors were afraid of my illness and couldn’t differentiate between it and me. Just because you cannot cure my illness, doesn’t mean you can’t help me. It means that the help you can give me is to try and make it easier for me to deal with this illness. It can mean taking away the excessive pain for at least a short time. It can mean shutting down symptoms by temporarily increasing treatment with steroids.

You say you fear my knowledge, when in fact my knowledge is your greatest asset. I know you can’t be an expert on everything. I can help educate you on my needs, if only you would listen. But you don’t fear my knowledge, you fear that my knowledge makes us equals. You fear that with my knowledge, it means I will know when you are wrong. Here is a secret: we can forgive you for not knowing or for making a mistake, but we cannot forgive you for choosing arrogance over help or for trying to pretend that you didn’t make a mistake. I will trust you and respect you more if you admit ignorance than if you pretend answers. Learn from my experience. Work with me! What would take you years to learn, months to research, I can tell you in a few minutes. But you have to trust me. You have to work with me, rather than putting yourself above me.

When I tell you my pain is different, that means something. After years of being in constant pain, I’m no shrinking violet that is too delicate to handle anything but the lightest of pressure. When I come in because of pain, when I come in because I don’t recognize the pain, that means something has changed. Yes, it might turn out to be just a new presentation of symptoms, but it can also mean something else. Don’t assume that just because I have this condition I am immune to everything else.

I had swine flu for a month before I was diagnosed, because a doctor refused to believe that I could tell when pain and nausea were different. How many people did I infect in that time, going to class? I have had pancreatitis multiple times, only to have had it dismissed as “just Crohn’s pain” until the tests came in with high lipase. I have had pain dismissed as “Just Crohn’s pain” as though Crohn’s pain on its own was not serious.

Doctors are so concerned with their own importance that they often seem to forget that their patients are human. Then they ask us to excuse them by claiming to be “only” human, when they fail to accord us the same decency. When they are reminded of their mortality rather than their godhood they elevate themselves by treating us as less than human so that they still maintain their upper hand.  And then when they are called out on it, they beg for forgiveness and blame the society that treats them as gods. Rather than taking responsibility for participating in this charade and allowing that to affect our quality of life, you ask us to participate by offering advice on deferring to your egos. Your very apology, your very secret, and your advice all spit in the face of our experiences by putting the burden on weak and exhausted bodies and minds rather than give up some measure of your privilege.

In short, I don’t have time to worry about whether or not I make you feel a little less like a god around me. I’m too busy trying to get through my day with my own body and mind kicking my ass the whole way.

Sincerely,

Patient Ania

Dear Doctor: A Response From A Patient

Lessons from a Root Canal

For the last four months, I have been struggling with extreme dental pain. Four months ago, I went to the dentist for the first time in over 3 years. I had three cavities that needed filling, and I was getting the first two filled. After the procedure, I started feeling pain in my teeth and jaws. I didn’t know what it was, so I went back to the dentist. She said that it was probably just healing pain but to come back if it continued, and that I would probably need a root canal. Unfortunately, I left the country to visit Alyssa’s parents. For the next two weeks I continued on a cocktail of Aleve and Tylenol. The pain wasn’t getting any better. It was getting worse. The day we got back home, I called the dentist and made an appointment. It would be in a week. Then two days before the appointment, on New Year’s Day, the pain got so intense that I couldn’t do it anymore. I went to an emergency dentist, who did an x-ray and gave me an unexpected answer: my wisdom teeth, which were already eventually to be removed, were infected and needed to be removed right away. There was nothing he could do so he gave me x-rays and some painkillers and sent me on my way.

Continue reading “Lessons from a Root Canal”

Lessons from a Root Canal