Major Payne

Today I diagnosed myself with lymphedema.  Yes, self-diagnosed because I couldn’t find anyone else to do so.

About two weeks ago, I started having pain in my shoulder, which eventually traveled down my arm.  I attributed this to a knot in my back muscles which pushed on nerves creating the pain (not an unusual occurrence for me over the years).  I started to notice, however, an accumulation of fluid under my armpit — so much so, that my arm and side were rubbing together, creating an irritation.  Eventually, I started noticing some swelling in my fingers, along little red splotches on my hands.  It took me a few days, but it finally clicked that this could be an early stage, mild lymphedema.

For those of you who are unfamiliar with this, lymphedema, “also known as lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system.” (per Wikipedia)  It often occurs in women who, like me, have had breast cancer with dissection/removal of lymph nodes.  My oncologist assured me that I did not need to worry about this, since I only had two nodes removed.  But I knew this was still a risk because of the wonderful world of blogging.  I have read first-hand accounts to the contrary.

Anyway, I called my oncologist this morning and learned that she was in meetings all day, and her PA was totally booked.  It was suggested that I call my primary care doctor, who I knew would be of little help.  I pursued an appointment with someone to validate my self-diagnosis.  Apparently my description of the symptoms was sufficient enough for them, because they sent me for a Doppler venous ultrasound.  This was, I believe, intended to rule out blood clotting / vein obstruction as the cause of the swelling.  That test proved negative, as expected.  Next step:  Off to a lymphedema clinic.  (Maybe it’s me, but I guess I was thinking someone more qualified would actually want to look at my symptoms…)

Since I am travelling for work for a few days, I won’t be able to go until Wednesday at the earliest.  For now, I’m trying to manage the pain, rest my arm, and pray that it stays mild and they are able to help me effectively manage this.  What a pain!

For my lymphedema friends in the blogosphere, any suggestions….?

No recipes today, but I do want to thank my mom for the homemade (sugar-free) applesauce.  Delicious!!!

*****

Major Payne (1995) – http://www.imdb.com/title/tt0110443/

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13 thoughts on “Major Payne

  1. If you check out my blog there Re lots of ideas … Self massage etc.. Exercises.. when you can try to rest your arm .. You need to get on top of it quickly so that it stays mild.. Sadly Lymphedema is often misunderstood or seen by doctors as insignificant but I fact it can have a huge I packed on life… You will also need to be measured for a compression sleeve to control the swelling… Yes a friend had only 3 nodes removed for breast cancer and her arm started to come up two weeks ago.. Like you doctors said it would not.. I am so sorry that you have to deal with this as well… Helen

    • Helen, I feel so educated on lymphedema from reading your blog this past year!! I think I know more about it than many of my doctors. (It’s why I refused to see my primary care doc… I KNOW I know more than he does!) I was trying to be careful to not trigger the lymphedema, but honestly, I think was did was driving for a longer period of time than I usually do. I certainly wouldn’t have considered driving one of those activities. So I feel so prepared to go to the lymphedema clinic because of everything I have learned from you! Thank you for the wonderful service you provide in educating all of us!!!

      • I am so glad it has helped you as that is my aim… It took years for me to educate myself and find the best care… Being armed with knowledge always helps!!

  2. The self-massage really helps me keep the LE at bay. When I start to feel some tightness, I do this and it usually resolves. Also, I find that if I don’t get in some vigorous aerobic activity for a few days, the symptoms are worse. Running is my LE antidote!

    • How many lymph nodes did you have removed? I am hoping that the massage is something the clinic will help teach me. I have been struggling with getting much cardio… or any exercise… due to the joint pain and trying to find time. Cooking from scratch takes so long, that I often do not have time (assuming I felt up to it). I know I need to do something more, I just haven’t figured out what or how. I can safely say that running will never be my antidote! lol

      • I had 16 nodes removed on the left and the sentinel node on the right. I’ll see if I can find a diagram to post about the self-massage. It’s really easy. As for the exercise, even if you could build up to 20 mins of walking and swing your arms, it makes a big difference. I hear you about the cooking!

      • Wow. 16???? I shouldn’t complain with two. Is this something you have to manage every day? I’ve read a bit about the massage but haven’t had time to do any research yet. If you have a resource handy, that would be great. Thank you!

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