Lymphedema

Dear Lymphedema,

Oh no you didn’t. You picked the wrong girl to eff with. (Trying to clean up my language, we’ll see how long this lasts)…

So, last Monday, the crease of my right arm (above my elbow) felt sore and achey. Didn’t think much of it since I’m a busy (and clumsy) girl. Tuesday, it was achey, slightly swollen, and also red and hot to touch. My thoughts were: blood clot, cellulitis, lymphedema. I decided to call Pluta. They did not seem very concerned. I had an upcoming appointment on Thursday and “worst case scenario, it’s a blood clot, so we can order an ultrasound on Thursday if it’s still swollen then”. Fine. I asked if I should wear my lymphedema sleeve just in case, they said that wasn’t a bad idea. So I did. And I slept in it. (Apparently you are not supposed to do that. Oops). Wednesday morning, I woke up, looked at my arm, and then noticed that my hand looked a little bit puffy. And this began the longest-feeling state of panic in my whole life. Okay, maybe not my whole life, but in recent days.
Long story short, I called Pluta 4 times, waited around for them to call me back, called my primary, finally said screw this waiting shit and went to the ED, waited for 5 hours with my mom, made friends with the triage nurse, got a room, (my three best friends brought me food and ❀️), had an ultrasound (unanticipated PTSD kicked in-brought be back to diagnostic ultrasound), had bloodwork, and at 10pm, I was discharged with no answer other than “edema”.<<<<<<<
lt;<<<<<<
ave lymphedema, a permanent, incurable, disfiguring, and not-at-all understood condition.

Stay tuned. If I do actually have it, you can expect my potty mouth to kick back in full swing.

πŸ’ͺ🏼<———-"edema" lolz.

6 thoughts on “Lymphedema

  1. I have the flexitouch by tactile medical that I use daily at home in addition to wearing a daytime sleeve customized compression and a nighttime sleeve just for sleeping. It sure keeps the lymphedema swelling in check.

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    1. Thanks so much! I have a tactile medical rep coming to my house this afternoon to give me more information! I’m glad it’s been helpful to you, I sure hope it works for me tooπŸ˜¬πŸ™πŸ»πŸ˜Š

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  2. Ugh…I’m so sorry you have to face this! I know from experience that when dealing with lymphedema (or even if you suspect the condition) it’s best to act quickly. There are several physical therapists in the area who specialize in lymphatic decongestive therapy. It made a world of difference for me. And you might check out LANROC (Lymphedema Awareness Network of Rochester) at the Coalition for support and information. Sending a hug!

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    1. Thanks so much Pat! I’m already a patient at Callan Harris, and they were able to get me on the schedule this week to see Mary Jo, and Sue will likely be able to pop on to assess the degree of swelling in my hand. (It’s really not bad at this point, barely noticeable until pointed out, but I don’t like it all the same…). Thank you so much for all of your support, Pat. Sending light and love your wayβ˜€οΈπŸ’•

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