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A Return of Clarity and a Letter To My Doctors

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I was right! I reduced the prednisone to 6.25 mg per day, and the depression lifted five days later. By April 19, I was able to think clearly again, and I thought, and thought, and thought. I have to take control. I have to get better. I have to cope better. I have to LIVE with this. I have to set a good example for my kids. I have to give them a healthy and active mom. I have to reclaim my life.

I was right on another count too, unfortunately. Reducing the prednisone allowed the inflammation to return, and with it some pain. It’s not enough pain to warrant taking pain meds, and I’m practicing biofeedback and mindfulness so that I can deal with it. The lumps and lesions are slowly growing, becoming redder and generally acting up. It’s a choice between pest or cholera. Do I prefer to be a prednisone psycho, or am I willing to deal with paralyzing pain? I choose to keep my mind and use my mind to deal with my body. I want to find a way to break free from the chains of pain that have immobilized me.

I resort to my most effective modus operandi: JUST DO IT! I have this thing I do when I am scared of something. I confront it head on. I do the things that scare me, so that I will no longer be scared of them, or at the very least, so they will not have power over me. I am shy and worry about not being accepted by the group of parents in my daughter’s class. What do I do? I become one of the room parents. I dread going to my kids’ school events, so I help organize them and I make myself go to 80% of them. I know that I have an accent in Danish, and I am afraid that it will get in the way of what I have to say. I open my mouth and talk anyway. I was terrified of birds as a kid. When I was 15, I got fed up with letting a phobia have so much power over me, so I did the most terrifying thing I could think of. I walked into a town square full of pigeons. I had hundreds of pigeons around me, and when I got to the other end of the square alive, I decided I could handle this stupid phobia. I was afraid of heights, so I dove off a cliff into the sea. You get the point.

I am afraid my doctors think I am nuts, so I wrote them a letter (which may just end up confirming their suspicions…):

How I Want To Proceed With Treatment and Follow-up and Why

First of all, I am tired of being a patient. I do not want to have an identity as an ill or weak person, a person in poor health. I do not want any illness, whether chronic or acute to define me. I recognize that I have certain chronic conditions, and that in the past two years I have gotten very ill three times, but I still see myself as fundamentally healthy, capable and strong-willed. Although I respect doctors and clinicians, I really don’t like to go to the doctor. I only do so when I really cannot figure out how to take care of something myself, or when I have to follow-up on my few chronic conditions. Although I work at a hospital, I really and truly hate being in hospitals. I do not like going through invasive diagnostic procedures. I don’t mind blood tests, as they are minimally invasive and give plenty of information.

I am a person who takes responsibility for my health and well-being. This does not make me a hypochondriac or qualify me as suffering from “sickness anxiety.” I do not think that it is pathological to inform and educate myself on my conditions and the treatment and management possibilities. I prefer to make an informed choice when it comes to taking medicines because I do worry about potentially harmful side effects. I prefer to take as few medicines as possible and manage my conditions through proper nutrition, lifestyle and exercise.

I am a highly sensitive person, and I am risk-averse when it comes to my body. I know myself well, and I know my body well. I know how I react to certain medications, and what helps me and what doesn’t. I have always been conscientious and analytical. I remember consciously deciding to protect my skin from the sun when I was four years old, becoming a vegetarian at age twelve, and going through my teen years with a minimum of risky behavior. I do not drink or smoke, and I observe safety rules. I am very cautious with my children. They must ride in car seats; they must wear helmets when they cycle; my furniture is bolted to the wall; potentially toxic substances are out of reach; we practice fire drills. This is my personality structure, and I do not believe it is pathological. There are many, many people like me.

In an ideal world, where I am not surprised by a strange and unpredictable illness, I would only go to the doctor four times a year to monitor my hypothyroidism, anemia, and winter depression. I would get my quarterly vitamin B-12 injection and a blood test for my thyroid function, a complete blood cell count and check my iron stores. All of my conditions are very well-managed. My thyroid replacement dose is adjusted as needed. I take extra iron and lower my (usually high) activity level when needed. The depression is the trickiest to manage, as it intensifies as a reaction to negative life events. I have found a medicine that works better than any other I have taken, and I am not willing to change it. I do not think that I need to be under the care of a psychiatrist who would change my medication or try to add medications and make me seem sicker than I am.

As far as my Idiopathic Granulomatous Mastitis is concerned, I want to stop all treatment and just learn to live with it. I have decided to see if this will burn itself out. I have let it steal four months of my life, and I want my life back. I don’t even want to think about having this illness. I know what it is. I know that it is not going to kill me, so I will learn to be okay with it. I really do not want my breast cut off, and I really do not want to deal with the side effects of the medicines that only offer temporary symptomatic treatment. I may need abscesses drained every now and then, and I may one day be so fed up with this illness that I will demand a mastectomy, but for now, I just want to let it go. I want to see myself as a relatively healthy person who happens to have a sick and deformed breast which will eventually get well. I can figure out how to work through the pain.

I have had Idiopathic Granulomatous Mastitis for four months now. I would like to think that the worst is over. I have experienced the extreme pain, flare-ups and leaking of pus and blood. It has been scary and uncomfortable and has generated a lot of anxiety for me. The anxiety was a result of trying to deal with the unknown. How long will this last? How bad will it get? Will I need surgery? I know what to expect now, so I can prepare myself to deal with this illness as it develops. I have decided to accept that I cannot know how long this will last. In the absence of a satisfactory cure, I can reframe my situation. I may have limited control of whatever process is going on in my breast, but I can control how I choose to react to it. Now that the initial shock has worn off, I choose to put mind over matter and take back control of my life. I am tired of being a patient and having so many doctors’ appointments and procedures. This reinforces the “sick role,” and I choose to reject this role.


About A.K.

I am: dreamer, mother, wife, daughter, sister, friend, writer, reader, musician, artist, teacher, translator. I am a citizen of the world. These nations are my home: Denmark, Ecuador, USA, Canada, France and Germany. I believe the purpose of life is to love, laugh and learn. I am over being upset for getting this very rare disease: Idiopathic Granulomatous Mastitis. Forgetting all the pain and havoc is tempting, but I will honor the lessons it brought and release my resentment. This blog is my way of coping and reaching out to others who may be going through similarly unfair and bewildering experiences.

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