Episode LXXXIV - just when you think that you're in control...
Attitude is everything. Attitude is everything. I will continue to be positive... even when things are difficult... I will...
I am still the half full cup...
It seems that activity, heat, and general living can create havoc with my lymphedema. I live in the south... with hot, humid summers for crying out loud. I like to paint. I like to type. I like to be busy. Ok, I like to do more than I should after cancer treatment (such as ripping up the old flooring to lay down new flooring), but I am an active person. I am a lot less active than I used to be, but I want to do some of the things I used too. Plus, I am right handed and my lymphedema is in my right arm and hand. Cruel irony!
I think I might have been a hand model...
So last week I went to the medical supply store to get a compression sleeve. Apparently I have the biggest upper arm in the world. Ok, that is an exaggeration... but they made me feel like I was freakishly disproportionate. My upper arm is more swollen than my hand. I know... my lymphedema is worse in my upper arm and arm pit area. I cannot have such odd dimensions that a general sleeve will not fit me!?!?!
Because of my freakishness they said I would have to have a custom sleeve. I was shocked because online there are companies that carry my dimensions (I know because I looked it up after I got home). Of course I was more annoyed because an off-the-shelf compression sleeve is around $100-$150 and the special ordered custom sleeve will start somewhere in the $200s. That does not include the price for the gauntlet (glove). Nothing with cancer has been cheap!!!
Even though I need a more durable medical sleeve I felt less rushed to buy it since my OT ordered a compression sleeve that I can wear on a general basis. So, I will wait to see if the ordered one fits before I feel bad because I have one of the only lymphedema arms in the city that is so unusually swollen that an off-the-shelf sleeve is impossible to fit and they will have to do a rare custom order.
Today I was back to my OT getting my bi-weekly massage (boobie massage) when we noticed my numbers were increasing. With the swelling now traveling more to my hand it was time to get a compression wrap. No more waiting for the medical supply store or the ordered sleeve. She was going to wrap my arm like a compressed mummy.
While the wrap looks like a typical bandage wrap, it is different. The pressure garments are made of fabric designed to put controlled amounts of pressure on different parts of the arm to help move fluid and keep it from building up. The wrap starts at the hand and works up towards the arm pit. Each layer progressing upwards. And each layer is tight, but not cutting off circulation. Underneath and/or on top a layer of compression material is placed for additional compression.
Wrap that arm!
My officially wrapped arm is snug. I mean it is tight and hard to move. I now realize the reason the wrap might work so well is because it limits your usability of the limb. I know that they encourage and you are suppose to use the wrapped arm, but everything was tougher to do. I mean I was shifting everything to my left hand from driving the car to answering the phone to eating my meals to bathroom care... left hand please.
Compression on! My poor swollen giant hand!
However, by the next morning my upper arm swelling had gone down a little. My hands still needed some relief so I gave myself another lymphatic massage and then re-wrapped myself to hopefully keep the swelling away. I was told to keep myself under wraps for the remainder of the week and all weekend. I am going to get tired of my limitations really quickly... someone grant me patience!!!!
Look the compression is working...
In my head...
So, I am learning that the more I use my right arm, especially in the heat, the more I swell. I actually have limitations... argh! The frustrating part is damage to the lymph system cannot be repaired. The best things I can do is continue the treatment given to control the swelling caused by lymphedema. The goal is to keep other problems from developing or getting worse... and hopefully I can learn to actually manage it long term.
Things that can make lymphedema worse: heat/sunburn (weather affects me), lifting too much weight (even small weight), repetitive motions (vacuuming, mopping, raking, etc), small cuts, shaving, warm showers/baths/water, undergarments (aka my stupid bra), and definitely NO blood pressure, IVs, needles in the arm!!! Learn more about preventing flare ups - Click Here.
I think I am going to have to really gain a lot of patience. I have daily health requirements that will last for a long time... I am suppose to give myself multiple lymphatic massages. I am suppose to wear compression garments. I am suppose to take medicine. Dang it... I have to be responsible for my health! I am inherently lazy about self care!!!
Every one who knows me is laughing at that last comment because they know how true it is!
“The strongest of all warriors are these two — Time and Patience.”
- Leo Tolstoy, War and Peace
Episode Reference: Here it goes again, OK go song
Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.