HUMIRA, or, my choiceless choice

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I sat in the nurse practitioner’s office knowing that the results of my colonscopy were not going to be good.  I had been vaguely conscious toward the end of the procedure, and heard the doctor comment that he wanted her to see these results, that the inflammation was bad.  I didn’t remember much of this until I sat in her chair awaiting the verdict.  That’s how it felt–that I was there to be told my fate.  I was grateful that she said there was no sign of polyps or cancer.  After all, I’d had bad symptoms for quite a while–almost 8 months at that point–and I had to reach the crisis before my stubbornness relented to the recognition that I just could not do this without pharmaceuticals.  This was so hard for me to take.  In my estimation, I failed.  I should have been able to heal my body with the sheer force of willpower and the thousands of dollars I had spent on supplements, naturopathy, acupuncture, herbs, and all of the other amazing therapies I strongly believe in.

Then she said the words I feared most: “You will never not be on medication.”  Never? How did she have the right to say this? All I needed was a little help to get back on track and then I got this, thanks.
I started to cry.  I felt devastated.

Then, it got worse.  She started talking about drugs that I hadn’t even researched because they were prescribed for the most extreme types of cases.  Surely that would not be me.  She said that I would have to be on HUMIRA for at least a year, that I would get training on how to inject the drug, and that there was support available through their website.

This is what I see when I log in to look at what has been termed “support” for my ongoing medication administration. EVERY SINGLE PAGE of their website begins in this way. It does not do a lot for my feeling of confidence that this is the path on which I want to embark, and yet, I really have not been given a choice. There’s a lot more, of course, but these are the highlights of the safety considerations.

http://www.humira.com/ulcerative-colitis/how-humira-works.aspx

Safety Considerations1

Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. HUMIRA may increase the chance of getting lymphoma, including a rare kind, or other cancers. HUMIRA can cause serious side effects including hepatitis B infection in carriers of the virus, allergic reactions, nervous system problems, blood problems, heart failure, certain immune reactions including a lupus-like syndrome, liver problems, and new or worsening psoriasis.

Use1

HUMIRA is a prescription medicine used in adults to help get moderate to severe ulcerative colitis under control (induce remission) and keep it under control (sustain remission) when certain other medicines have not worked well enough. It is not known if HUMIRA is effective in people who stopped responding to or could not tolerate anti-TNF medicines.

Important Safety Information About HUMIRA® (adalimumab)1

What is the most important information I should know about HUMIRA?

You should discuss the potential benefits and risks of HUMIRA with your doctor. HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. You should not start taking HUMIRA if you have any kind of infection unless your doctor says it is okay.

  • Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB.
    • Cancer. For children and adults taking TNF blockers, including HUMIRA, the chance of getting lymphoma or other cancers may increase. There have been cases of unusual cancers in children, teenagers, and young adults using TNF blockers. Some people have developed a rare type of cancer called hepatosplenic T-cell lymphoma. This type of cancer often results in death. If using TNF blockers including HUMIRA, your chance of getting two types of skin cancer (basal cell and squamous cell) may increase. These types are generally not life-threatening if treated; tell your doctor if you have a bump or open sore that doesn’t heal

I have not yet resigned myself to the risks involved in taking this medication, but the night before I went to the gastroenterology office to have my injection training, I woke up in the night to the decision that I would make this my choice.  I would do just what my doctors said for one year.  I would follow their instructions and take this medication into my body and I would heal.  After a year, we would work toward a different solution.  I took this middle of the night revelation to be my cue.  Give in to the process and let your stubborn mind take a break from having to know everything.  Let your body take a break from guarding against any minute contamination for fear of the weeks of backsliding that would follow.  I do not love this path, but I am learning to appreciate the fact that I can choose to go out dancing if I want to because I don’t have to be right next to a bathroom every moment.  I can go for a hike and enjoy the snow on the hawthorn tree branches.  In the end, maybe these small things are worth the risk of possibly developing rare lymphomas and melanomas.  I don’t know, really, but I am trying my best to appreciate the gifts I am being given as I learn to live more fully, more intentionally, and with less self-judgement.  I am learning to embrace my own inherent goodness as I struggle with choicelessness.  Maybe I will even learn that HUMIRA is basically good.  We’ll see where this experiment takes me.

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