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About me: I moved to Denmark from New Orleans after Hurricane Katrina. I am originally from Ecuador and have also lived in Canada, Germany and France. I graduated from Tulane University with a B.A. in English and French and worked as a language teacher and special education teacher in New Orleans and Copenhagen. I will be a licensed occupational therapist in January. I have worked at a hospital as a lab technician for a population health research project since 2010. I am currently embarking on my dream career as a freelance writer.

I am monkey-minded, restless and curious. I am a good enough mother and wife with dubious housekeeping skills but awesome delegating skills. I am a reader and a writer and an over-thinker. I am a walking bag of contradictions. Most of all, I just want to get on with my life and put this illness behind me.


9 responses »

  1. A.K.,
    Hi! My name is Sue and I’m from Ontario, Canada. I’m very glad to have found your blog (not that I am at all happy that you have this crappy condition) because one of the things I have discovered on my journey with IGM is that it can be a very lonely experience. So few people have it (lucky them!) that there just isn’t much information or discussion about it. I only discovered your blog this morning and I want to go back and read all your entries from the beginning, but what I’ve read so far is very similar to my experience (I was diagnosed in December 2011 after initially being told I had aggressive breast cancer).
    Anyway, I look forward to reading all about you and hope your ride on this crazy rollercoaster is over soon!

    • Hi Sue! Thank you for your comment. It means so much to me to know that my writing has been helpful to you on your journey. It is lonely and frustrating, and it is so hard to find meaning in what is happening. I’m definitely ready to get off this insane rollercoaster and go drive around on the bumper cars instead!

  2. Thank you for sharing your journey. How are you now? I am still trying to figure out what is wrong with me… so far it has been 7 weeks of painful inflammation and 3 surgeon drained breast abscesses. I am also on Wellbutrin and have low iron and vitamin D. Biopsy did not show IBC (big relief!).

    • Hi Dina. I’m doing great, thanks. I had a mastectomy in early February, and I am completely healed and recovered. No pain. Full range of motion. I have my life back. I also have fine levels of iron and vitamin D now, and am healthier and stronger than I have been in years. I hope that you are feeling better, and that you get a proper diagnosis. It does sound like IGM. Glad it’s not IBC.

  3. Hi! Do you have any updates on your GM post-mastectomy? I was diagnosed with IGM and I have been in pain for the last 4-6 months. And now I have abscesses forming and bursting. I want the breast gone!

    • Hi D.S. I hope you get well as soon as possible. The pain is overwhelming. All I can tell you, is that I do not regret my mastectomy. I have my life back, and I am happy to have cut the IGM out of my body. I hope that you find a cure that works for you. Some may feel that a mastectomy is too extreme, but I am so happy and relieved that I did it. I don’t miss my breast, and I am fine with the way I look. Best wishes for you.

  4. Thanks for responding! Could you tell me about your recovery (how long did it take, etc)? And did your insurance cover the surgery (since it is considered a valid form of treatment for IGM)? I will be meeting with my breast surgeon tomorrow and *fingers crossed* scheduling my mastectomy.

    • Good luck tomorrow! I hope your breast surgeon listens to your wishes. You know your body best. I live in Denmark, so I don’t have to worry about insurance or payment issues. (We have single-payer universal health care.) I know that American women who have written on the medhelp IGM forum have said that their insurance covered the cost of the surgery and subsequent reconstruction, so you should be covered.

      I was extremely weakened at the time of my mastectomy, so it took me about a month to get back to a normal routine, about two months to be able to lift things, and four months to feel really good. Six months later, I feel fantastic. The post-surgical pain was under 10% of the IGM pain. I got immediate relief. Physical therapy helped me regain range of motion. I’ll have my last session in three weeks. I’ll blog in more detail about the recovery process and include photographs of the scar’s progress sometime next week.

      • Hi! Did you find your granulomatous mass had shrunk by the time you went for surgery? Or was there little to no change? My mass changes shape and size almost daily it seems and right now I have no active flare ups but one breast is slightly warmer than the other and very scarred. I worry that it is considering a come back and, at the same time, worry about having surgery. What was your IGM doing as you got closer to surgery? And did you ever feel like maybe it was getting better on its own?

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