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Six-month Update

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Six months. Half a year. Too long. I can’t believe I still have Idiopathic Granulomatous Mastitis (IGM). I feel like a survivor, even though this is not a deadly disease. It is just a very uncomfortable and painful illness. My life still feels unfairly disrupted, and I struggle every single day to reconcile the difference between what my body can do and what I want to do. I have days where I push myself past my limits because I get so tired of being tired and having to be careful. I have days when I am irritated that I have to take it easy, and I have days when I am cool about having to lounge. I also have some days where I feel fine and energetic and can be active and do everything I want. I am a very driven person with a short attention span and a million things I want to do, preferably at the same time, so being forced to s-l-o-w down is not something I accept graciously. I’m coming clean here: I am no zen master. I have a wild and restless monkey mind. Ritalin works wonders for it, but I only swipe my kids’ pills when I really need to focus to finish a project by the deadline. (Yes- fidgety, monkey-minded mommas and hyperactive dads often breed fidgety, monkey-minded children who need a little pharmaceutical nudge to survive in a school setting. It’s appalling. I know.)

There I go, getting distracted again. Back on subject! Here are the highlights of this six-month update:

1) I am feeling better physically and psychologically. Yay! I only have a near-constant dull ache that I notice and purposely ignore. I like to think that I have achieved mastery of my situation. I am no longer an emotional wreck. I am so equanimous, that I have considered stopping my happy pills. I won’t stop them, though, because I know better and the heavy psychological burden of dealing with a chronic illness is still present.

2) I finally finished my three-month doxycycline therapy yesterday. I am convinced it was in vain, and my teeth turned brown along the gumline. Not pretty. I’m seeing my dentist in a week. I’ve started a course of probiotics to “repopulate my intestinal flora.” My kids think it’s pretty gross that I’m swallowing capsules containing 6 billion bacteria of eight different species. I think I’ll sprinkle some on their guacamole on the sly. Yes, I’m evil.

3) I am slowly tapering off the prednisolone. I am down to 3.85 mg per day. Perhaps that explains my cheerier outlook. I have a DEXA scan scheduled next month to monitor my bone density, which is a necessary precaution because prednisolone is famous for causing bone loss. I fully expect to find out that I have exceptionally strong, dense and sturdy bones. I have been taking calcium plus vitamin D supplements religiously. I have even spent 20 minutes without sunscreen in the sun on an almost daily basis and have started eating yogurt, even though I had sworn off dairy and am a bit of a sunscreen addict. My blood work revealed that even though I take high doses of vitamin D, I was deficient! How can this be? (Vitamin D deficiency also causes depression.)

4) My boob has stopped exploding. The big lump seems to be a tiny bit smaller, though it is still a hard mass surrounded by “pebbles.” I have three wonky purple scars and a visibly lumpy little boob. Oh, well. It could be worse. And, yes, I’m still pretty sure that the prednisolone is what is helping, but I’m weaning off it on my rheumatologist’s and breast surgeon’s advice. I also have a vested interest in preserving my bone density, sanity and trim figure.

5) I have recovered enough to go back to the gym!!!!!!! I’ll confess: I’m a gym rat. I love working out on all the cool machines. I have been to the gym a grand total of five times over the past month for gentle twenty-minute workouts. It sounds puny when I think that last summer I used to go six or seven times a week for one to two hours at a time of intense workouts, but I see my baby steps as a huge accomplishment. I am under strict doctors’ orders not to exceed thirty minutes moderate exercise five times a week. I’ve gone for longer walks and have continued with occasional yoga. I remember when the light boob-jostling brought about by a slow walk reduced me to tears. I can’t wait to start running again, but I have to.

6) I went on a wonderful family vacation to a water park, which of course involved a lot of swimming, jumping and sliding. It also involved communal showers. I was not at all self-conscious about my boob, and if anybody looked at it and winced or recoiled, I did not notice. Body image is definitely not an issue.

7) My kids have their mom back. My hubby thinks I’m more fun to be around, and he is absolutely right about that. I want to be the best wife I can be to my amazing husband.

8) I am considering mastectomy again. It’s complicated. Or maybe it’s not. More on this on my next blog entry.

I thank you, my dear friends and family, for your support. Thank you for listening, reading and writing notes of encouragement. Thank you for your prayers and well-wishes. I still am fundamentally shy, and I can’t help but feel awkward about opening up and revealing so much. It feels so strange to use my voice in this way, when I have normally preferred to use a pseudonym for writing and haven’t wanted anybody I know to read my work and know it’s mine. You have helped me make it through this half-year. I better not still be writing about this six months from now! I want to be well and put this behind me. I want to write about food and post my favorite healthy recipes with mouth-watering photographs instead. (Before my husband chokes on his burger… Yes, honey. I am perfectly capable of assembling yummy meals. You just don’t witness it that often because you don’t care for “rabbit food” and “bird seed.” Also, your cooking is so much more deliciously decadent.)

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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.

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