February 02, 2009

A lymphedema nightmare (literally)

The other night I had a lymphedema bandaging nightmare. While sleeping I felt a fair amount of discomfort from the bandaging. Maybe there was a fold of the inner sleeve pressing against a nerve, or some tingling in my fingertips or hand that went from mildly annoying to outright frustrating. So I started to unwrap the bandages -- I thought. I kept unwrapping and unwrapping and never getting any relief.

That's when I realized that I was asleep and dreaming (actually, having a nightmare) about lymphedema. My frustration and that bit of pain finally woke me up. I could hardly move fast enough to really remove the bandaging.

You can see in the photo that I like to sleep on my side with my arms curled up against my chest (or a dog). This is clearly impossible when bandaged because the bandaging doesn't permit me to bend my elbow. Sometimes I think I get the best sleep of the night in the few minutes or so that I lay in bed after I've unwrapped the bandages. Note the pile of bandaging strewn next to me....


  1. i'm sorry its so uncomfy, but your dog looks like he is good therapy

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  3. bjohanna10:25 AM

    Jill's earlier post "Day 42 of lymphedema flare up" mentioned her needing approval from health insurance carrier for lymphedema PT appointments and that they only approve six visits at a time. If you're not familiar with lymphedema and HMO's, this infuriating process is because HMO's consider lymphedema to not be a chronic condition (like my arthritis is) but more in the category of something like a leg fracture, in the sense that after a specific number of treatments (which appears to be six) you're fine and don't need more PT. Nothing could be further from the truth. It is indeed a life-long condition that can flare up at most any time and can last for however long it lasts.

    I have facial and oral lymphedema. The pressure garmet for my neck and chin is a hoot and the most uncomfortable thing I've ever worn. And there is no such thing as a pressure garmet for the tongue. (Another reason to not smoke tobacco.)

  4. Dear Jill,

    I just received a card in the mail from Sharsheret. I called and was placed on their mailing list a few months ago. I am so thankful to be on this list, because it helped me find your blog.

    From what I see on your blog, you truly are an inspiration. You have quite a talent with your words and that is very comforting to other women in your circumstances.

    I was diagnosed with LCIS last year and stumbled upon Sharsheret by reading about them in my American Jewish Living magazine.

    Baruch Hashem for their organization and for women like you and your strength and courage.

    Chazak v'Ematz (Be strong and courageous.