Health Care: Denied

My gastrointerologist told me if I am not interested in being on Remicade (or a similarly priced drug) for the rest of my life I should seek treatment elsewhere. She did not prescribe me Prednisone to stop my flare. She wants me to take tests and have a colonoscopy. She wants to discuss medication options in a month. She is comfortable with me being in an active flare for 6 weeks without medication.

Clearly this is upsetting news, and also problematic. Because I cannot afford her treatment option, she is going to forego prescribing me the standard treatment for my condition that has been used for the past 70 years. Without tests to verify that I am having a flare, she will not prescribe the medication I need. She does not believe that I know my body well enough to know when I am sick. (Normally I would be okay with tests, but since I am already taking steroids the tests won’t show any inflammation. I need a new prescription now because I do not have enough pills to safely taper down from the prescribed dosage.)

The first time I had a Crohn’s flare, it took 3 months and at least 7 different doctors to get a diagnosis. I was turned away by doctors who told me that my month long diarrhea was not chronic enough. I took all kinds of tests. I had resident doctors stare at my asshole. I was wasting away. I was starving to death.

I had a colonoscopy, and they ripped apart my bleeding ulcerated colon to take biopsies to confirm the visible inflammation. Twice.

I do not need to go through the process of proving that I have a chronic disease a second time. I just need steroids to stop the flare. I refuse to wait another 3 months, wasting away and starving to death. I refuse to wait 6 weeks.

7 days into my flare I started taking steroids so I could avoid further damage to my colon. This seems prudent. The longer the flare continues, the more damage is done to my colon. Holding me hostage financially and by withholding basic, affordable, evidence-based prescription medication is unethical and unconscionable.

Food Diary 7-29-20

  • Pain 3/10
  • Bloating 1/5
  • BM 5/7
  • Fatigue 2/10

Been coasting along with about the same daily symptoms, and eating the same standard foods. I added in dirty rice yesterday. It was made with white rice and was not very filling. Whole grains y’all!

Still on the steroids. Side effects: insomnia, tension and feeling “up” all the time, lack of sleep causing mental fatigue.

Coffee, toast + peanut butter, banana, date, walnut, chocolate, dirty rice, oatmeal + coconut + almonds, whole wheat pasta + olive oil + nutritional yeast.

Meditation for Pain

Please allow me to share with you the meditation techniques I have used to help with chronic pain and generalized anxiety and panic disorder. This shit works.

Beginner

Once or twice a day, check in with your self with a guided meditation. A short five minute video can help you practice and get in the practice of entering a meditative state. You will feel benefits pretty immediately.

You will probably only need to listen to a video or guided meditation a few times before you basically have it memorized and your body is learning the muscle memory of the exercise. I like videos because I know how much time I am putting into my practice.

A Focus On Pain

After you are in a meditative state, you can find the pain in your body. Visualize the pain. Give it a size, shape, texture, and volume.

Now focus on the rest of your body, or specifically something that is not in pain. I usually wiggle my toes or thumbs to connect more firmly to this larger, non-pain body. My non-pain body surrounds and envelops my pain.

Shift your focus back to your pain and experience it as long as you can handle without getting overwhelmed. Then focus back on your fingers or toes. Switching your focus like this plays into somatic theories of pendulation and titration.

Like a pendulum, you are passing back and forth between a manageable and an unmanageable sensation. This helps you break up feelings of being out of control with feelings of comfort control and normalcy.

Titration is about slowly increasing your tolerance to unmanageable sensations. We start slow, and just dip our toe in. Eventually that sensation becomes manageable, and we can lean further into experiencing this unmanageable sensation.

Blur the Edges of Acute Pain

Once I have located and visualized the pain in my body, and I have felt the non-pain body around and containing my pain, I spread out my non-pain body to allow the pain more room.

I relax the boundary or the edges of my acute pain by visualizing the shape of my pain getting blurry. The pain is blurring into my non-pain body. As it spreads, it may feel less acute or less restricted. Continue this visualization with deep breath, expanding your non-pain body as you breathe.

Isolation

Now entering the second week of steroids for my Crohn’s flare. What is people? What is human interaction? Maybe I’ll be able to do that again in 2 months when I’ve tapered off Prednisone.

Joy Division: Isolation

I have my telehealth visit the day before I’m supposed to go back to work. Hopefully my job will understand my disability and let me phone it in for teacher work week.

And now, some advice from the Centers of Disease Control:

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