About Me

My name is Rebecca. I’m the proud mother of Andrew, my 9-year old Lego building, bike riding, Harry Potter-reading, busy and wonderful boy. I’ve been Jay’s wife and partner for the past 15 year. I am a free-lance writer. I’ve also got sarcoidosis–in my heart, brain, lungs, liver, bones, and skin. I was diagnosed back in 2004, when Andrew was only three months old. Since then, I’ve had three major surgeries, more MRIs than I can count, dozens of other medical tests, and two implanted medical devices. I’ve spent tens of thousands of dollars on medical bills. I’ve taken Prednisone, Methotrexate, Enbrel, Remicade, Cytoxan, CellCept, and Rituxan. Nothing’s cured me–even two years of chemo infusions every-other week. But I’m still ticking and still writing–and still putting Andrew to bed, volunteering in his classroom, and trying to enforce a rule or two around the house when I’m well enough to get out of bed. I’ve never had the fun of parenting without being sick. I’ve learned how to be a Mom at the same time I’ve had to contemplate my own mortality. This blog is about living through sickness, with sickness, and in spite of sickness. It’s about living the life I have–not the life I think I should have, the life I want to have, or the life I could have. Chronic Town isn’t a place we chose. But it’s where we are. It’s time to get real.

I’m always thrilled to have comments. You can post them on the blog or e-mail me at chronic.town@hotmail.com

Thanks for reading! Be well and live fully.

Rebecca

8 Comments

  1. Evelyn Gonzalez said,

    Hello Rebecca, my name is Evelyn and I just found your posts. I too was diagnosed with sarcoidosis of the lungs in June 2008. My worst symptom is the fatigue and joint pain, I just want to be in bed all the time. I am a single mother of a beautiful nineteen year old boy, the love of my life. I will be praying for you and will be reading your posts.

    Love,
    Eve

    • Rebecca Stanfel said,

      Hi Evelyn,

      I’m so sorry for not writing back sooner. I didn’t notice the comment section on this part of the blog until today. I’ve had my share of joint pain and fatigue and wanting to be in bed all the time. As the mother of a six-year old boy, I know how much energy a kid can take. I imagine single parenting is literally double the work, so you must be a strong, amazing woman. Are you taking in medication to address your symptoms? I know that a lot of folks with the rheumatic form of sarcoid have had luck with the TNF inhibitors like Enbrel or Remicade. I get monthly Remicade infusions and they do help ease the worst of the joint pain. The sarcoidosis specialist I see also takes the chronic fatigue I experience seriously and prescribed a medication called Focalin. As best as I can understand, Focalin is a version of Ritalin that helps lessen the fatigue that cancer patients get from chemotherapy. My sarcoid doctor figured that it might help his patients with fatigue. And it does help me, though I don’t take it every day since the drug can be addictive and requires higher doses over time.

      I appreciate you reading my blog and taking the time to write. I hope you don’t mind, but I will send a copy of this to your e-mail account to be sure you get it.

      Best wishes and please keep in touch,

      Rebecca

  2. Basil Rene said,

    Hi Rebecca,

    I just found your blog and hope to read all of it over time. It is so good to find someone else with cardiac sarcoidosis, although i would never wish this on anyone.. You can read my story on my blog at http://lifewithsarcoidosis.wordpress.com/ so I am not going to bore you here with my story. I hope you keep on blogging as I have not been able to come across another blog from a person’s personal outlook living with cardiac sarcoidosis. Keep it up, and hoping to read more.

    BR

    • Rebecca Stanfel said,

      Hi Basil,

      I’m sorry that you are having to deal with cardiac sarcoidosis, but I’m glad that we are able to connect in cyberspace. It helps me to know I’m not alone with this nasty disease that no one has ever heard of. I’m excited to check out your blog. I appreciate you writing to me.

      Wishing you health and strength,

      Rebecca

  3. Sara said,

    Hi, I stumbled across your blog and I’m very sad to hear of your health problems. I’m a Montana mommy with sarc in my lungs/liver. I wanted to ask questions about who you use see for care, I.e. In MT or if you go out of state. I would love to chat if u have time.

  4. Teri said,

    I too have just found you blog. Sorry to hear your having such a time. I too am on Cellcept, so far it seems to be working some. Other meds have failed. Thank you for your updates. Take care.

    • Rebecca Stanfel said,

      Hi Teri,

      Thanks for reading my blog! Sorry to hear that you have to deal with sarcoidosis too, though I’m glad that the Cellcept is working where other drugs have failed. Isn’t it do frustrating to “fail” a treatment? I think the Cellcept plays a big role in my return to moderate functionality. I hope it works even better for you!

      Thanks for your good wishes and for taking the time to write a comment.

      Best,
      Rebecca

      • Basil Rene said,

        __________________ Sent from my iPad

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