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Medical Week, Part 3: This is Getting Old

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Friday, March 22

Today is my third appointment of the week and what feels like the umpteenth appointment since this started. The good Boob Doc gives me the biopsy results: absolutely no signs of cancer. Relief. I can stop worrying about the big C now. She tells me once again that the best option for me right now is long-term doxycycline therapy, but can’t really define long-term. It could be one month, or it could be six. There are too many unknown variables. I tell her that I’m experiencing pain again and am having to use pain meds again. I show her my new pink lump which seems to be getting bigger. When she palpates my breast, she says that she thinks it’s getting smaller. She tells me that the prednisolone shot has worn off by now, and that if I get another one, I can stop the swelling again. I say that I am not interested in treating symptoms only to have them return in an endless cycle. I am too wary of and vulnerable to the side effects of predsnisolone. I will only take it again if it is to cool the inflammation pre-op.

My sister is with me. She means well, but has a big mouth and I ask her to leave because I’m so upset. (She doesn’t.) She tells the doctor what I’ve been worrying about. She tells the doctor how nervous I am. She insists that I tell the doctor everything that is running through my mind about this. She tells me to tell her about my blog. I’d really rather not. I am worried that when the doctor sees how neurotic I am, she won’t take me seriously anymore. This is MY space to process the emotional effects of this illness. What do doctors care about emotional effects? I’ll get told to see a shrink, and I definitely don’t want that.

I’ve had a doctor dismiss serious symptoms before. Last August, I collapsed at the gym during a group exercise class. My muscles just wouldn’t work. My fingers could not grab the workout equipment. I’d been doing this workout class for months, and all of a sudden, my body went on strike. When I got home, I couldn’t walk. My legs felt like wet noodles, and I just dropped to the ground. My fingers could not grasp anything, and even my thinking got fuzzy. I called the doctor for an appointment and saw a GP (not my usual GP) who told me that my body was doing this because it was heralding a winter depression. WTF? I had been fine and chipper and working out one to two hours a day for the past few months. There was not even an inkling of depression. She said that my seeking a doctor’s appointment about this problem indicated that I have medical anxiety (a euphemism for hypochondria). She suggested I see a shrink.

I was sick and very weak for a couple of months. I went back to see my real GP, and guess what? A blood test revealed that I had extremely low iron and low potassium levels, which can lead to muscle failure. It wasn’t all in my head. With the proper supplements and a lot of rest, I got better by December, just before I developed Idiopathic Granulomatous Mastitis. I did end up developing a depression over the winter. It started in October as a response to being so physically ill. I dealt with it swiftly and effectively, because I don’t like anything bringing me down.

I had spent all of 2011 and almost half of 2012 seriously ill. I had such heavy periods that I became seriously anemic. The last few periods before I saw a doctor made me faint from blood loss. I saw a GP who didn’t test for the cause of the bleeding and just gave me a Mirena hormonal IUD in June 2011. By November, I was very sick and in a lot of pain, and I saw a gynecologist who removed the IUD and found the cause of the bleeding. It was something serious, and I had to undergo several procedures to fix it.

I don’t go to the doctor unless it is serious. Encounters with doctors who are dismissive make me think much more than twice before I call for an appointment. It is humiliating and infuriating to be accused of hypochondria. Every single time I have had strange symptoms, I have been diagnosed with a weird disease I never even heard of. Every single time. I don’t want to be sick. I don’t want to have strange diseases. This is not who I am. I am lively and strong and energetic.

I recovered from my serious endometrial problems and rebuilt my blood supply by June. I had energy! I could do the things I love to do! I could go to the gym and go running and hiking! I took advantage of this energy and health, but in the back of my mind, I wondered how long it would last. I guess I overdid it with the working out. I’m just such a sucker for endorphins, and I want a strong and healthy body. I was making up for lost time, and I did myself in.

What does this have to do with the way I communicate with my Boob Doc? Why do encounters with dismissive doctors taint the way I communicate with all doctors? I am afraid that when a doctor sees that I have a history of depression, all symptoms get chalked up to mental issues. It’s the other way around. Getting physically sick triggers depressions. Winter triggers depressions. Getting physically sick in the winter is a double whammy.

The Boob Doc tells me that it will take many months of treatment before I get well, if I get well with treatment. I agree to give it until December. There is no cancer, and the pain is minimal, so I can live with this, right? I do tell her that if this is not gone by then, or if it becomes unbearable before my deadline, I want that mastectomy. She reluctantly agrees to keep that option on the table. Being sick is getting old, so I’m going to keep doing what I do best: pretend I am fine most of the time and carry on with my life.

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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.

2 responses »

  1. I have just found out that I have idiopathic granulomatous mastitis. It seem to make me feel like I come sleep forever. I have never slept during the day time, but I find myself laying down on the bed and falling asleep. I don’t know much about this disease, only that it is rare. I was wondering how you all were feeling before you all found out that you had this idiopathic granulomatous mastitis disease. With me I only felt tired. Then one day I got all the symptoms in about 4 hours. Yes I was worried, so on the Monday I rang my specialist and told him. I ended up seeing the next day. Once I found out what it was the only thing now is I want to know how I got it and what i’m in for in the next few years.

    Reply
    • Hi Tara,
      I’ve been offline for a long while, but I’m back. It breaks my heart to realize that yet another woman is suffering from this very painful disease. I hope that you are feeling better. I am 100% cured and healed, thanks to a mastectomy. I will post about it later on today.

      Reply

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